Journal articles
Sabatini S, Martyr A, Ukoumunne OC, Ballard C, Collins R, Pentecost C, Rusted JM, Quinn C, Anstey KJ, Kim S, et al (In Press). Attitudes Toward Own Aging and Cognition among Individuals Living with and without Dementia: Findings from the IDEAL Programme and the PROTECT Study.
Abstract:
Attitudes Toward Own Aging and Cognition among Individuals Living with and without Dementia: Findings from the IDEAL Programme and the PROTECT Study
Abstract
. Background: it is unclear whether people with dementia (PwD) have more negative attitudes toward own aging (ATOA) than people without dementia and what factors influence ATOA among PwD. We investigated whether PwD have more negative ATOA than individuals without dementia and whether cognition and dementia subtype are associated with ATOA in PwD.Methods: Data from the IDEAL and PROTECT studies were used to compare ATOA between 1,502 PwD (mean (SD) age = 76.3 (8.5)) and 6,377 individuals without dementia (mean (SD) age = 66.1 (7.1)). Linear regressions and ANOVA were used.Results: PwD reported slightly more negative ATOA than people without dementia; this relationship disappeared after controlling for depression and self-rated health. In PwD more positive ATOA showed negligible associations with better general cognition, memory performance, verbal fluency, and visuospatial ability. However, after adjusting for covariates only better visuospatial ability predicted more positive ATOA. Additional analyses showed that before and after controlling for covariates, individuals with poorer self-reported visual acuity have more negative ATOA. Amongst dementia subtypes, people with Parkinson’s disease dementia and dementia with Lewy bodies reported most negative ATOA. Conclusions: ATOA between PwD and people without dementia do not differ. ATOA in PwD appear to be affected not by cognitive impairment but by other characteristics that vary across dementia subtypes. Among PwD, those with Parkinson’s disease dementia and dementia with Lewy bodies may have higher risk of experiencing negative ATOA due to the motor and visual impairments that they experience.
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Yates J, Stanyon M, Samra R, Clare L (In Press). Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare professionals. International Psychogeriatrics
Sabatini S, Ukoumunne O, Ballard C, Collins R, Anstey K, Diehl M, Brothers A, Wahl H-W, Corbett A, Hampshire A, et al (In Press). Cross-Sectional Association between Objective Cognitive Performance and Perceived Age-related Gains and Losses in Cognition. International Psychogeriatrics
Sabatini S, Ukoumunne O, Brothers A, Diehl M, Wahl H-W, Ballard C, Collins R, Corbett A, Brooker H, Clare L, et al (In Press). Differences in Awareness of Positive and Negative Age-Related Changes Account for Variability in Health Outcomes.
Abstract:
Differences in Awareness of Positive and Negative Age-Related Changes Account for Variability in Health Outcomes
Abstract
. Higher awareness of positive age-related changes (AARC gains) is related to better mental health, whereas higher awareness of negative age-related changes (AARC losses) is related to poorer mental and physical health. So far perceived gains and losses have been explored separately, but people report gains and losses concurrently in varying degrees, and different profiles of gains and losses may be differentially associated with health. We identified profiles of gains and losses and explored whether different profiles differed in physical, mental, and cognitive health. We used cross-sectional data from the PROTECT study (N= 6,192; mean(SD) age= 66.1(7.0)). Using latent profile analysis, a four-class solution showed the best model fit. We found that 45% of people perceived many gains and few losses (Class 1); 24% perceived moderate gains and few losses (Class 2); 24% perceived many gains and moderate losses (Class 3); 7% perceived many gains and many losses (Class 4). Analysis of variance and Chi-square tests showed that Class 1 had relatively better physical, mental, and cognitive health, followed by Classes 2, 3, and 4. Experiencing one’s ageing to a high degree as gain may be related to better health only when individuals interpret ageing as involving low levels of loss across several life domains. Risk in terms of poorer health emerged in those who perceived high losses. Considering gains and losses in parallel, rather than separately, may lead to a more fine-tuned understanding of relations with health.
Abstract.
Sabatini S, Ukoumunne O, Brothers A, Diehl M, Wahl H-W, Clive B, Collins R, Corbett A, Brooker H, Clare L, et al (In Press). Differences in awareness of positive and negative age-related changes account for variability in health outcomes.
European Journal of AgeingAbstract:
Differences in awareness of positive and negative age-related changes account for variability in health outcomes
Higher awareness of positive age-related changes (AARC gains) is related to better mental health, whereas higher awareness of negative age-related changes (AARC losses) is related to poorer mental and physical health. So far perceived gains and losses have been explored separately, but people report gains and losses concurrently in varying degrees, and different profiles of gains and losses may be differentially associated with health. We identified profiles of gains and losses and explored whether different profiles differed in physical, mental, and cognitive health.
We used cross-sectional data from the PROTECT study (N= 6,192; mean (SD) age= 66.1(7.0)).
Using latent profile analysis, a four-class solution showed the best model fit. We found that 45% of people perceived many gains and few losses (Class 1); 24% perceived moderate gains and few losses (Class 2); 24% perceived many gains and moderate losses (Class 3); 7% perceived many gains and many losses (Class 4). Analysis of variance and Chi-squared tests showed that Class 1 had relatively better physical, mental, and cognitive health, followed by Classes 2, 3, and 4.
Experiencing one’s ageing to a high degree as gain may be related to better health only when individuals interpret ageing as involving low levels of loss across several life domains. Risk in terms of poorer health emerged in those who perceived high losses. Considering gains and losses in parallel, rather than separately, may lead to a more fine-tuned understanding of relations with health.
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Quinn C, Jones IR, Clare L (In Press). Illness representations in caregivers of people with dementia. Aging and Mental Health
Pentecost C, Collins R, Dawson E, Stapley S, Quinn C, Charlwood C, Allan L, Victor C, Clare L (In Press). Navigating the coronavirus pandemic two years on: Experiences of carers of people with dementia from the British IDEAL cohort.
International Journal of Care and CaringAbstract:
Navigating the coronavirus pandemic two years on: Experiences of carers of people with dementia from the British IDEAL cohort
We explored carers experiences during the COVID-19 pandemic in England to identify long-term impacts and implications, and to suggest future support for caregivers.
Data were collected during COVID-19 rapid response studies (IDEAL-CDI; INCLUDE) from carers participating in a British longitudinal cohort study (IDEAL). Semi-structured interview data were compared to their accounts from previous interviews conducted during the first 18 months of the pandemic.
There was indication of some return to pre-pandemic lifestyles but without appropriate support carers risked reaching crisis point. Evidence points to a need for assessment and management of support needs to ensure well-being and sustainable dementia caregiving.
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Wu Y-T, Clare L, Jones IR, Nelis SM, Quinn C, Martyr A, Victor CR, Lamont RA, Rippon I, Matthews FE, et al (In Press). Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme. Social Psychiatry and Psychiatric Epidemiology
Quinn C, Toms G, Anderson D, Clare L (In Press). SELF-MANAGEMENT GROUP INTERVENTIONS FOR PEOPLE WITH MCI OR DEMENTIA: a SYSTEMATIC REVIEW. Alzheimer's & Dementia: the Journal of the Alzheimer's Association, 10(4), P769-P769.
Yates JA, Clare L, Woods RT, Matthews FE (In Press). Subjective memory complaints are involved in the relationship between mood and MCI.
Journal of Alzheimer's Disease,
48, S115-S123.
Abstract:
Subjective memory complaints are involved in the relationship between mood and MCI
Subjective memory complaints (SMC) are a criterion in many definitions of mild cognitive impairment (MCI). However, there is controversy over whether this is useful and appropriate, as previous research has suggested that SMC may be a function of mood problems such as anxiety and depression. This paper aimed to establish the relationship between MCI and mood in older people and to investigate the role that SMC play in the relationship. Structured interviews were conducted with community dwelling older people in Wales to collect information regarding cognitive functioning, mood and well-being. A widely-used algorithm was used to categorise 3173 participants into three groups: not cognitively impaired, MCI including SMC (MCI), and MCI without SMC (MCIW). The odds of experiencing anxiety or depression were calculated for each cognitive group. Participants with MCI had increased odds of experiencing symptoms of both anxiety and depression, but the odds were not changed for participants in the not cognitively impaired or MCIW categories. A mediation analysis was performed on the whole sample using cognition as a dichotomous variable, grouped using an age-, education-, and gender-adjusted median cut off point. This showed that SMC partially mediated the relationship between anxiety and cognition, and depression and cognition. Mood problems may be related to SMC rather than objective cognitive impairment, as only participants with MCI that included SMC showed increased odds of experiencing anxiety and depression. SMC are likely to play a mediating role in the relationship between mood and cognitive functioning.
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Sabatini S, Ukoumunne O, Ballard C, Collins R, Corbett A, Brooker H, Clare L (In Press). The Cross-sectional Relationship between Pain and Awareness of Age-Related Changes. British Journal of Pain
sabatini S, Ukoumunne O, Ballard C, Brothers A, Kaspar R, Collins R, Kim S, Corbett A, Aarsland D, Hampshire A, et al (In Press). UK Validation of Two Measures of Awareness of Age-Related Change (AARC).
Abstract:
UK Validation of Two Measures of Awareness of Age-Related Change (AARC)
Abstract
. Background: a questionnaire assessing awareness of positive and negative age-related changes (AARC gains and losses) was developed in the US and Germany. We validated the short form of the measure (AARC-10 SF) and the cognitive functioning subscale from the 50-item version of the AARC (AARC-50) questionnaire in the UK population aged 50 and over. Methods: Data from 14,797 participants in the PROTECT cohort were used to explore and confirm the psychometric properties of the AARC measures including: validity of the factor structure; reliability; measurement invariance across males and females and across individuals with and without a university degree; and convergent validity with measures of self-perception of aging and mental, physical, and cognitive health. We also explored the relationship between demographic variables and AARC. Results: We confirmed the two-factor structure (gains and losses) of the AARC-10 SF and the AARC-50 cognitive functioning subscale. Both scales showed good reliability and convergent validity. The meaning of AARC gains and losses was the same across males and females and across individuals with and without a university degree. Items composing AARC scales had the same meaning across individuals with and without a university degree. Items composing the AARC-50 cognitive functioning subscale had the same meaning across males and females. Two items in the AARC-10 SF had different meaning across males and females. Demographic variables significantly predicted AARC gains and losses. Conclusions: the AARC-10 SF and AARC-50 cognitive functioning subscale can help to identify UK individuals who perceive age-related changes in their mental, physical, and cognitive health.
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Liddle J, Stuart A, Worthy P, Levine M, Kastelle T, Wiles J, Pachana N, Clare L (In Press). “Building the threads of connection that we already have”: the nature of connections via technology for older people. Clinical Gerontologist: the journal of aging and mental health
Sabatini S, Martyr A, Gamble LD, Jones IR, Collins R, Matthews FE, Knapp M, Thom JM, Henderson C, Victor C, et al (2023). Are profiles of social, cultural, and economic capital related to living well with dementia? Longitudinal findings from the IDEAL programme.
Soc Sci Med,
317Abstract:
Are profiles of social, cultural, and economic capital related to living well with dementia? Longitudinal findings from the IDEAL programme.
RATIONALE: Research exploring social, cultural, and economic capital among people with dementia is scarce. OBJECTIVE: We describe levels of social, cultural, and economic capital in people with dementia at baseline and levels of social and cultural capital 12 and 24 months later. We identify groups of people with dementia having different combinations of capital and explore whether the identified groups differ in personal characteristics at baseline and in quality of life (QoL), satisfaction with life (SwL), and well-being over time. METHOD: Baseline, 12-months, and 24-months data from 1537 people with dementia (age, mean = 76.4 years; SD = 8.5; Alzheimer's Disease = 55.4%) enrolled in the IDEAL cohort were analyzed. Social (interactions with friends, civic participation, social participation, neighborhood trust, social network), cultural (education, cultural participation) and economic (annual income) capital, QoL, SwL, well-being, and personal characteristics were assessed. RESULTS: Compared to people their age, people with dementia reported slightly lower frequency of interactions with friends, social networks and social support, civic and cultural participation, education, and annual income. However, social engagement, cultural participation, and annual income are low among British older adults. Latent profile analysis identified four groups that, based on their levels of social, cultural, and economic capital were named socially and economically privileged (18.0% of participants); financially secure (21.0% of participants); low capital (36.9% of participants); and very low capital (24.1% of participants). Latent growth curve models showed that over time QoL, SwL, and well-being remained largely stable for all groups. Compared to the low capital group, the socially and economically privileged and financially secure groups had higher QoL and well-being whereas the group with very low capital had poorer QoL, SwL, and well-being. CONCLUSIONS: New policies and efforts from the government, philanthropic foundations, the voluntary and primary care sectors are needed to address social, cultural, and economic disadvantage among people with dementia.
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Clare L, Pentecost C, Collins R, Martyr A, Litherland R, Morris RG, Quinn C, Gamble LD, Sabatini S, Victor C, et al (2023). Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire.
Dementia (London),
22(7), 1548-1566.
Abstract:
Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire.
OBJECTIVES: We aimed to co-produce and validate an accessible, evidence-based questionnaire measuring 'living well' with dementia that reflects the experience of people with mild-to-moderate dementia. METHODS: Nine people with dementia formed a co-production group. An initial series of workshops generated the format of the questionnaire and a longlist of items. Preliminary testing with 53 IDEAL cohort participants yielded a shortlist of items. These were tested with 136 IDEAL cohort participants during a further round of data collection and assessed for reliability and validity. The co-production group contributed to decisions throughout and agreed the final version. RESULTS: an initial list of 230 items was reduced to 41 for initial testing, 12 for full testing, and 10 for the final version. The 10-item version had good internal consistency and test-retest reliability, and a single factor structure. Analyses showed significant large positive correlations with scores on measures of quality of life, well-being, and satisfaction with life, and expected patterns of association including a significant large negative association with depression scores and no association with cognitive test scores. CONCLUSIONS: the co-produced My Life Questionnaire is an accessible and valid measure of 'living well' with dementia suitable for use in a range of contexts.
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Martyr A, Nelis SM, Morris RG, Marková IS, Roth I, Woods RT, Clare L (2023). Exploring longitudinal changes in implicit awareness of dementia: an investigation of the emotional Stroop effect in healthy ageing and mild dementia.
Journal of neuropsychologyAbstract:
Exploring longitudinal changes in implicit awareness of dementia: an investigation of the emotional Stroop effect in healthy ageing and mild dementia.
The aim of the study was to investigate responses to dementia-relevant words in healthy older people and to investigate changes in response over 20-months in people with early-stage dementia. An emotional Stroop task, using colour-naming dementia-relevant words, was used as an indicator of implicit awareness of dementia. Overall, 24 people with dementia and 24 healthy older people completed an emotional Stroop task (T1). People with dementia completed the same task again after 12 (T2) and 20 (T3) months. For people with dementia emotional Stroop performance was contrasted with ratings of explicit awareness based on a detailed interview at T1 and at T2. For healthy older people and people with dementia response times to dementia-relevant words were significantly longer than those for neutral words. The effect was absent for people with dementia at T3. This decline in the emotional Stroop effect was not associated with cognitive decline as measured by the MMSE. Ratings of explicit awareness showed no significant change over time. There was no association between explicit awareness and implicit awareness. Implicit awareness of the condition is evident in early-stage dementia and can be elicited even where there is reduced explicit awareness. The emotional Stroop effect for dementia-relevant words in people with dementia appears to decline over time, independently of changes in MMSE score, suggesting that implicit awareness fades as time progresses.
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McDermid J, Ballard C, Khan Z, Aarsland D, Fox C, Fossey J, Clare L, Moniz-Cook E, Soto-Martin M, Sweetnam A, et al (2023). Impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic prescribing for people with dementia in nursing home settings.
Int J Geriatr Psychiatry,
38(1).
Abstract:
Impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic prescribing for people with dementia in nursing home settings.
OBJECTIVES: This study aimed to determine the impact of the Covid-19 pandemic on neuropsychiatric symptoms and antipsychotic use in people with dementia living in nursing homes. METHODS: This was a comparative analysis of baseline data from two large nursing home studies, one conducted during (COVID-iWHELD study) and one prior (WHELD study) to the pandemic. It involves data from 69 and 149 nursing homes, and 1006 and 666 participants respectively. Participants were people with established dementia (score >1 on Clinical Dementia Rating Scale). Resident data included demographics, antipsychotic prescriptions and neuropsychiatric symptoms using the Neuropsychiatric Inventory Nursing Home version. Nursing home data collected were nursing home size and staffing information. RESULTS: Overall prevalence of neuropsychiatric symptoms was unchanged from pre-pandemic prevalence. Mean antipsychotic use across the sample was 32.0%, increased from 18% pre-pandemic (Fisher's exact test p
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Clare L, Kudlicka A, Collins R, Evans S, Pool J, Henderson C, Knapp M, Litherland R, Oyebode J, Woods R, et al (2023). Implementing a home-based personalised cognitive rehabilitation intervention for people with mild-to-moderate dementia: GREAT into Practice.
BMC Geriatr,
23(1).
Abstract:
Implementing a home-based personalised cognitive rehabilitation intervention for people with mild-to-moderate dementia: GREAT into Practice.
BACKGROUND: Evidence-based rehabilitative interventions, if widely implemented, could equip people with dementia and their families to manage life with the condition and reduce the need for health and care services. The aim of this translational study, building on evidence from the GREAT randomised controlled trial, was to develop a foundation for implementing the GREAT Cognitive Rehabilitation intervention in community-based services for people with mild-to-moderate dementia. METHODS: Key elements of the implementation strategy were identifying and supporting managerial and clinical leadership, conducting collaborative planning and target-setting, training and supporting practitioners, and providing external facilitation. We developed implementation plans with, and trained staff in, 14 organisations. We subsequently worked closely with 11 of these, 10 National Health Service organisations and one private home care provider, to support practitioners to deliver GREAT Cognitive Rehabilitation over a 12-month period. Outcome evaluation examined the perspectives of local steering group members, practitioners and service users, and the reach, effectiveness and cost of the intervention. RESULTS: Implementation was disrupted by the COVID-19 pandemic, but six organisations completed at least six months of intervention delivery. Forty-one practitioners, mainly occupational therapists, provided the intervention, and 54 people with dementia completed a course of GREAT Cognitive Rehabilitation. Goal attainment by people with dementia exceeded levels of improvement seen in the original trial. People with dementia, carers, practitioners and steering group members all evaluated the intervention positively, and economic analysis indicated that the intervention could be provided at modest cost. However, we identified a range of mainly organisational barriers that impeded implementation and limited the potential for sustainability. CONCLUSIONS: GREAT Cognitive Rehabilitation benefits people with dementia, can be delivered effectively at modest cost in routine services, and is viewed positively by people with dementia, family carers and practitioners. To fully realise these benefits and achieve widespread and sustainable implementation, however, requires sufficient resources and a reorientation of service priorities towards preventive and rehabilitative approaches. TRIAL REGISTRATION: National Institute for Health Research (NIHR) Central Portfolio Management System, registration number 38994.
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Stapley S, Pentecost C, Collins R, Quinn C, Dawson E, Morris R, Sabatini S, Thom J, Clare L (2023). Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort.
Ageing and Society, 1-25.
Abstract:
Living with dementia during the COVID-19 pandemic: insights into identity from the IDEAL cohort
Abstract
. The continuing COVID-19 pandemic and social restrictions have impacted on the cognitive decline and mental health of people with dementia. Social isolation and loss of activities due to social restrictions may also have implications as to sense of identity for people with dementia. As part of the INCLUDE (Identifying and Mitigating the Individual and Dyadic Impact of COVID-19 and Life Under Physical Distancing on People with Dementia and Carers) component of the IDEAL (Improving the Experience of Dementia and Enhancing Active Life) cohort study, the overall aim of this subtle realist qualitative study was to explore the perspectives of people with dementia on living through the COVID-19 pandemic within the context of the ‘post-vaccine’ period and the national lockdowns in England and Wales; and to determine perceived challenges to and facilitators of ‘living well’ during the COVID-19 pandemic and beyond as restrictions were eased. In addition, the study findings are considered in relation to understandings of identity in dementia which the broader accounts of living through the pandemic have highlighted. Seven people with mild-to-moderate dementia were interviewed and themes were derived using framework analysis. Themes suggest interviewees' stoic acceptance of the pandemic and social restrictions but also fear of decline related to the temporality of their condition as well as loss of self-confidence to re-engage with the world. Interviewees managed threats to social identity by striving to maintain social and emotional connections, where the importance of a shared, social identity, particularly for people with young-onset dementia, was also apparent. Unlike in previous studies during the pandemic, the relevance of occupation for identity was observed, where maintaining previous or new activities or occupations was important to facilitate identity as well as to keep a sense of purpose. Therefore, as well as supporting people with dementia as the pandemic eases, future research into occupation and identity in dementia is of potential value.
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Sabatini S, Martyr A, Gamble LD, Collins R, Matthews FE, Morris RG, Rusted JM, Pentecost C, Quinn C, Clare L, et al (2023). Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program.
J Appl Gerontol,
42(2), 290-301.
Abstract:
Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program.
The extent to which people with dementia are involved in everyday decision-making is unclear. We explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. We used IDEAL data for 1182 people with dementia and their caregivers. Baseline mean score on the decision-making involvement scale was 31/45; it minimally declined over time. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making.
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Dawson E, Collins R, Pentecost C, Stapley S, Quinn C, Charlwood C, Victor C, Clare L (2023). Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort.
Dementia (London),
22(4), 760-782.
Abstract:
Navigating the coronavirus pandemic 2 years on: Experiences of people with dementia from the British IDEAL cohort.
BACKGROUND AND OBJECTIVES: People with dementia have been affected in unique ways during the COVID-19 pandemic. It is not known whether the impact of the pandemic has changed with time or with the changes in social restrictions. This study explored how experiences of coping with the effects of the pandemic in the UK changed over time. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with people with dementia living in the community in England and Wales who had taken part in a qualitative interview at an earlier stage of the pandemic. We applied framework analysis to identify themes and compared these with interviewees' previous accounts. FINDINGS: Nine people aged between 51 and 89 years were interviewed; four were female and five had early onset dementia. We identified three themes: 1. Navigating a changing world: Living with coronavirus; 2. A 'downward spiral': Managing advancing dementia; and 3. Availability, accessibility, and suitability of support. Findings reflect participants' ongoing caution about re-emerging from social restrictions to resume valued activities, and how this led to coping behaviours to minimise the impact on wellbeing in the absence of formal support and services. DISCUSSION AND IMPLICATIONS: Despite easing of restrictions across the UK, the negative impact of the coronavirus pandemic on people with dementia continues. Whilst individuals and services have adapted to some of the challenges, there is now an opportunity to rebuild support networks and services to ensure people with dementia are suitably advised, supported and socially engaged to allow them to live as well as possible.
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Sabatini S, Martyr A, Gamble LD, Jones IR, Collins R, Matthews FE, Victor CR, Quinn C, Pentecost C, Thom JM, et al (2023). Profiles of social, cultural, and economic capital as longitudinal predictors of stress, positive experiences of caring, and depression among spousal carers of people with dementia.
Aging Ment Health,
27(7), 1335-1343.
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Profiles of social, cultural, and economic capital as longitudinal predictors of stress, positive experiences of caring, and depression among spousal carers of people with dementia.
OBJECTIVE: We explored (1) social, cultural, and economic capital in spousal carers of people with dementia; (2) profiles of carers with different levels of capital; (3) whether the identified profiles differ in levels of stress and positive experiences of caring, and likelihood of depression over time. METHODS: Baseline (2014-2016), 12-month, and 24-month follow-up data were analyzed for 984 coresident spousal carers of people with dementia. We assessed social, cultural, and economic capital, stress, positive experiences of caring, depression. RESULTS: on average, carers reported infrequent social and cultural participation. Most carers were not socially isolated, trusted their neighbours, had education at least to age 16, and had an income aligned with the 2014 UK average. We identified four groups of carers with different levels of capital. Although on average stress was low, depression was infrequent, and positive experiences of caring were moderately frequent, the group of carers with lowest capital was the least stressed and reported the most positive experiences of caring over time. Compared to the two groups with better capital, those with poorer capital were more likely to be depressed over time. CONCLUSION: Social, cultural, and economic resources may decrease likelihood of depression, but not stress, in carers of people with dementia.
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Collins R, Owen S, Opdebeeck C, Ledingham K, Connell J, Quinn C, Page S, Clare L (2023). Provision of Outdoor Nature-Based Activity for Older People with Cognitive Impairment: a Scoping Review from the ENLIVEN Project. Health & Social Care in the Community, 2023, 1-23.
Sabatini S, Dritschel B, Rupprecht FS, Ukoumunne OC, Ballard C, Brooker H, Corbett A, Clare L (2023). Rumination moderates the longitudinal associations of awareness of age-related change with depressive and anxiety symptoms.
Aging Ment Health,
27(9), 1711-1719.
Abstract:
Rumination moderates the longitudinal associations of awareness of age-related change with depressive and anxiety symptoms.
OBJECTIVE: Lower awareness of age-related gains (AARC-gains) and higher awareness of age-related losses (AARC-losses) may be risk factors for depressive and anxiety symptoms. We explored whether: (1) Baseline AARC-gains and AARC-losses predict depressive and anxiety symptoms at one-year follow-up; (2) age and rumination moderate these associations; (3) levels of AARC-gains and AARC-losses differ among individuals with different combinations of current and past depression and/or with different combinations of current and past anxiety. METHODS: in this one-year longitudinal cohort study participants (N = 3386; mean age = 66.0; SD = 6.93) completed measures of AARC-gains, AARC-losses, rumination, depression, anxiety, and lifetime diagnosis of depression and anxiety in 2019 and 2020. Regression models with tests of interaction were used. RESULTS: Higher AARC-losses, but not lower AARC-gains, predicted more depressive and anxiety symptoms. Age did not moderate these associations. Associations of lower AARC-gains and higher AARC-losses with more depressive symptoms and of higher AARC-losses with more anxiety symptoms were stronger in those with higher rumination. Individuals with both current and past depression reported highest AARC-losses and lowest AARC-gains. Those with current, but not past anxiety, reported highest AARC-losses. CONCLUSION: Perceiving many age-related losses may place individuals at risk of depressive and anxiety symptoms, especially those who frequently ruminate.
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Hunt A, Martyr A, Gamble LD, Morris RG, Thom JM, Pentecost C, Clare L (2023). The associations between personality traits and quality of life, satisfaction with life, and well-being over time in people with dementia and their caregivers: findings from the IDEAL programme.
BMC Geriatr,
23(1).
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The associations between personality traits and quality of life, satisfaction with life, and well-being over time in people with dementia and their caregivers: findings from the IDEAL programme.
BACKGROUND: Cross-sectional evidence indicates that certain personality traits may influence how well people with dementia and their caregivers are able to live alongside the condition. However, no studies to date have explored these associations longitudinally. The present study aimed to explore whether each of the Five-Factor personality traits were associated with change over two years in perceptions of 'living well' for people with dementia and their caregivers. 'Living well' was conceptualized as a composite of quality of life, satisfaction with life, and subjective well-being. METHODS: Data were analyzed from 1487 people with dementia and 1234 caregivers who took part in the IDEAL cohort. Participants were categorized into low, medium, and high groups for each trait using stanine scores. Latent growth curve models investigated associations between these groups and 'living well' scores for each trait at baseline and at 12 and 24 months. Covariates included cognition in people with dementia and stress in caregivers. A Reliable Change Index was calculated against which to evaluate changes in 'living well' scores over time. RESULTS: at baseline, neuroticism was negatively associated with 'living well' scores for people with dementia, while conscientiousness, extraversion, openness, and agreeableness were positively associated. For caregivers, neuroticism was negatively associated with 'living well' scores at baseline while conscientiousness and extraversion were positively associated. 'Living well' scores were mostly stable over time with no influence of personality traits on observed changes. CONCLUSIONS: Findings suggest that personality traits, particularly neuroticism, have a meaningful impact on how people with dementia and caregivers rate their capability to 'live well' at baseline. Over time 'living well' scores for each personality trait group were largely stable. Studies utilizing longer follow-up periods and more appropriate measures of personality are needed to corroborate and extend the findings of the present study.
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McMaster M, Kim S, Clare L, Torres SJ, Cherbuin N, Anstey KJ (2023). The feasibility of a multidomain dementia risk reduction randomised controlled trial for people experiencing cognitive decline: the Body, Brain, Life for Cognitive Decline (BBL-CD).
Aging Ment Health, 1-9.
Abstract:
The feasibility of a multidomain dementia risk reduction randomised controlled trial for people experiencing cognitive decline: the Body, Brain, Life for Cognitive Decline (BBL-CD).
OBJECTIVES: to evaluate the feasibility of a proof-of-concept multidomain dementia risk reduction intervention. METHOD: an 8-week, parallel-group RCT, focused on increasing adherence to lifestyle domains of Mediterranean diet (MeDi), Physical Activity (PA), and Cognitive Engagement (CE). Feasibility was evaluated against the Bowen Feasibility Framework objectives of: Acceptability of the intervention, compliance with the protocol, and efficacy of the intervention to change behaviour in the three domains of interest. RESULTS: High acceptability of the intervention was demonstrated through a participant retention rate of 80.7% (Intervention: 84.2%; Control: 77.4%). Compliance to the protocol was strong with 100% of participants completing all educational modules and all MeDi and PA components, with 20% compliance for CE. Linear mixed models demonstrated efficacy to change behaviour through significant effects of adherence to MeDi (χ2 = 16.75, df = 3, p <. 001) and CE (χ2 = 9.83, df = 3, p =.020), but not PA (χ2 = 4.48, df = 3, p =.211). CONCLUSION: Overall the intervention was shown to be feasible. Recommendations for future trials in this area are: the implementation of practical, one-on-one sessions as they are more effective than passive education at eliciting behaviour change; use of booster sessions to increase likelihood of lifestyle changes being sustained; and collection of qualitative data to identify barriers to change.
Abstract.
Author URL.
Martyr A, Ravi M, Gamble LD, Morris RG, Rusted JM, Pentecost C, Matthews FE, Clare L, IDEAL study team (2023). Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme.
Alzheimer's & dementia : the journal of the Alzheimer's AssociationAbstract:
Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme.
IntroductionImpaired cognition and instrumental activities of daily living (iADL) are key diagnostic features of dementia; however, few studies have compared trajectories of cognition and iADL.MethodsParticipants from the IDEAL study comprised 1537, 1183, and 851 people with dementia, and 1277, 977, and 749 caregivers at baseline, 12 and 24 months, respectively. Addenbrooke's Cognitive Examination-III and Functional Activities Questionnaire were used to measure cognition and iADL, respectively. Scores were converted to deciles.ResultsSelf-rated iADL declined on average by -0.08 (-0.25, 0.08) decile points per timepoint more than cognition. Informant-rated iADL declined on average by -0.31 (-0.43, -0.18) decile points per timepoint more than cognition.DiscussionCognition and self-rated iADL declined at a similar rate. Informant-rated iADL declined at a significantly greater rate than cognition. Therefore, either cognition and perceived iADL decline at different rates or informants overestimate increasing iADL difficulties compared to both cognition and self-ratings.HighlightsSelf-ratings of the degree of functional difficulties were consistent with cognition Decline in self-rated everyday activities was consistent with cognitive decline Informant-ratings of everyday activities declined more than cognition.
Abstract.
Sabatini S, Martyr A, Ukoumunne OC, Ballard C, Collins R, Pentecost C, Rusted JM, Quinn C, Anstey KJ, Kim S, et al (2022). Attitudes toward own aging and cognition among individuals living with and without dementia: findings from the IDEAL programme and the PROTECT study.
BMC Geriatrics,
22(1).
Abstract:
Attitudes toward own aging and cognition among individuals living with and without dementia: findings from the IDEAL programme and the PROTECT study
Abstract
. Background
. It is unclear whether people with dementia (PwD) have more negative attitudes toward own aging (ATOA) than people without dementia and what factors influence ATOA among PwD. We investigated whether PwD have more negative ATOA than individuals without dementia and whether cognition and dementia subtype are associated with ATOA in PwD.
.
. Methods
. Data from the IDEAL and PROTECT studies were used to compare ATOA between 1502 PwD (mean (SD) age = 76.3 (8.5)) and 6377 individuals without dementia (mean (SD) age = 66.1 (7.1)). Linear regressions and ANOVA were used.
.
. Results
. PwD reported slightly more negative ATOA than people without dementia; this relationship disappeared after controlling for depression and self-rated health. In PwD more positive ATOA showed negligible associations with better general cognition, memory performance, verbal fluency, and visuospatial ability. However, after adjusting for covariates only better visuospatial ability predicted more positive ATOA. Additional analyses showed that before and after controlling for covariates, individuals with poorer self-reported visual acuity have more negative ATOA. Amongst dementia subtypes, people with Parkinson’s disease dementia and dementia with Lewy bodies reported most negative ATOA.
.
. Conclusions
. ATOA between PwD and people without dementia do not differ. ATOA in PwD appear to be affected not by cognitive impairment but by other characteristics that vary across dementia subtypes. Among PwD, those with Parkinson’s disease dementia and dementia with Lewy bodies may have higher risk of experiencing negative ATOA due to the motor and visual impairments that they experience.
.
Abstract.
Alexander CM, Martyr A, Clare L (2022). Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort.
International Journal of Geriatric Psychiatry,
37(4).
Abstract:
Changes in awareness of condition in people with mild‐to‐moderate dementia: Longitudinal findings from the IDEAL cohort
AbstractObjectivesAwareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post‐diagnostic support.MethodsUsing longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community‐dwelling people with mild‐to‐moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case‐matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness.ResultsAt baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case‐matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co‐morbidities.ConclusionsSelf‐reported awareness of difficulties can change and may increase over time in people with mild‐to‐moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease‐related symptom, and highlights the complex, individual and dynamic nature of awareness.
Abstract.
Gamble LD, Matthews FE, Jones IR, Hillman AE, Woods B, Macleod CA, Martyr A, Collins R, Pentecost C, Rusted JM, et al (2022). Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study.
BMC Geriatrics,
22(1).
Abstract:
Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study
AbstractBackgroundMany people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services sooner. The aim of this study was to identify demographic characteristics and neuropsychiatric symptoms associated with being undiagnosed, which may help clinicians be more aware of signs that could be indicative of early-stage or undetected dementia.MethodsThis cross-sectional study uses data from waves 1 and 2 (two years apart) of the Cognitive Function and Ageing Studies Wales (CFAS Wales). CFAS Wales participants were included who had a study assessment of dementia, as determined by the Automated Geriatric Examination for Computer Assisted Taxonomy (AGECAT) algorithm and by expert assessment, and who had had their primary care records checked for a clinical diagnosis of dementia. We identified 19 people with a diagnosis of dementia and 105 people living with undiagnosed dementia, and explored demographic characteristics and the presence or absence of a range of neuropsychiatric symptoms in the undiagnosed population using logistic regression.ResultsFindings suggest that people living with dementia who have better cognition, have more years of education, or live in more deprived areas are less likely to have a diagnosis. In terms of neuropsychiatric symptoms, depression and sleep problems were associated with being undiagnosed. Apathy was common across all people living with dementia, but those with a diagnosis were more likely to have severe apathy.ConclusionsThis study has clinical practice implications as the findings may help clinicians be more aware of characteristics and symptoms of people who are undiagnosed or who are at greater risk of remaining undiagnosed, enabling them to be more vigilant in picking up signs of dementia at an earlier stage.
Abstract.
Delgado J, Evans PH, Gray DP, Sidaway-Lee K, Allan L, Clare L, Ballard C, Masoli J, Valderas JM, Melzer D, et al (2022). Continuity of GP care for patients with dementia: impact on prescribing and the health of patients.
Br J Gen Pract,
72(715), e91-e98.
Abstract:
Continuity of GP care for patients with dementia: impact on prescribing and the health of patients.
BACKGROUND: Higher continuity of GP care (CGPC), that is, consulting the same doctor consistently, can improve doctor-patient relationships and increase quality of care; however, its effects on patients with dementia are mostly unknown. AIM: to estimate the associations between CGPC and potentially inappropriate prescribing (PIP), and with the incidence of adverse health outcomes (AHOs) in patients with dementia. DESIGN AND SETTING: a retrospective cohort study with 1 year of follow-up anonymised medical records from 9324 patients with dementia, aged ≥65 years living in England in 2016. METHOD: CGPC measures include the Usual Provider of Care (UPC), Bice-Boxerman Continuity of Care (BB), and Sequential Continuity (SECON) indices. Regression models estimated associations with PIPs and survival analysis with incidence of AHOs during the follow-up adjusted for age, sex, deprivation level, 14 comorbidities, and frailty. RESULTS: the highest quartile (HQ) of UPC (highest continuity) had 34.8% less risk of delirium (odds ratio [OR] 0.65, 95% confidence interval [CI] = 0.51 to 0.84), 57.9% less risk of incontinence (OR 0.42, 95% CI = 0.31 to 0.58), and 9.7% less risk of emergency admissions to hospital (OR 0.90, 95% CI = 0.82 to 0.99) compared with the lowest quartile. Polypharmacy and PIP were identified in 81.6% (n = 7612) and 75.4% (n = 7027) of patients, respectively. The HQ had fewer prescribed medications (HQ: mean 8.5, lowest quartile (LQ): mean 9.7, P
Abstract.
Author URL.
Sabatini S, Ukoumunne OC, Brothers A, Diehl M, Wahl H-W, Ballard C, Collins R, Corbett A, Brooker H, Clare L, et al (2022). Differences in awareness of positive and negative age-related changes accounting for variability in health outcomes.
Eur J Ageing,
19(4), 1087-1097.
Abstract:
Differences in awareness of positive and negative age-related changes accounting for variability in health outcomes.
Higher awareness of positive age-related changes (AARC gains) is related to better mental health, whereas higher awareness of negative age-related changes (AARC losses) is related to poorer mental and physical health. So far perceived gains and losses have been explored separately, but people report gains and losses concurrently in varying degrees, and different profiles of gains and losses may be differentially associated with health. We identified profiles of gains and losses and explored whether different profiles differed in physical, mental, and cognitive health. We used cross-sectional data from the PROTECT study (N = 6192; mean (SD) age = 66.1 (7.0)). Using latent profile analysis, a four-class solution showed the best model fit. We found that 45% of people perceived many gains and few losses (Class 1); 24% perceived moderate gains and few losses (Class 2); 24% perceived many gains and moderate losses (Class 3); 7% perceived many gains and many losses (Class 4). Analysis of variance and Chi-squared tests showed that Class 1 had relatively better physical, mental, and cognitive health, followed by Classes 2, 3, and 4. Experiencing one's ageing to a high degree as gain may be related to better health only when individuals interpret ageing as involving low levels of loss across several life domains. Risk in terms of poorer health emerged in those who perceived high losses. Considering gains and losses in parallel, rather than separately, may lead to a more fine-tuned understanding of relations with health.
Abstract.
Author URL.
Pentecost C, Collins R, Stapley S, Victor C, Quinn C, Hillman A, Litherland R, Allan L, Clare L (2022). Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants.
Health Soc Care Community,
30(6), e4594-e4604.
Abstract:
Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants.
This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID-19 vaccination roll-out. We conducted 12 semi-structured interviews with people with dementia aged 50-88 years, living alone or with a partner, and 10 carers aged 61-78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re-engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.
Abstract.
Author URL.
Sabatini S, Ukoumunne OC, Ballard C, Collins R, Corbett A, Brooker H, Clare L (2022). Exploring awareness of age-related changes among over 50s in the UK: findings from the PROTECT study.
Int Psychogeriatr,
34(9), 789-803.
Abstract:
Exploring awareness of age-related changes among over 50s in the UK: findings from the PROTECT study.
OBJECTIVES: Older people describe positive and negative age-related changes, but we do not know much about what contributes to make them aware of these changes. We used content analysis to categorize participants' written comments and explored the extent to which the identified categories mapped onto theoretical conceptualizations of influences on awareness of age-related change (AARC). DESIGN: Cross-sectional observational study. PARTICIPANTS: the study sample comprised 609 UK individuals aged 50 years or over (mean (SD) age = 67.9 (7.6) years), enrolled in the PROTECT study. MEASUREMENTS: Between January and March 2019, participants provided demographic information, completed a questionnaire assessing awareness of age-related change (AARC-10 SF), and responded to an open-ended question asking them to comment on their responses. RESULTS: While some of the emerging categories were in line with the existing conceptual framework of AARC (e.g. experiencing negative changes and attitudes toward aging), others were novel (e.g. engagement in purposeful activities or in activities that distract from age-related thoughts). Analysis revealed some of the thought processes involved in selecting responses to the questionnaire items, demonstrating different ways in which people make sense of specific items. CONCLUSIONS: Results support the ability of the AARC questionnaire to capture perceived age-related changes in cognitive functioning, physical and mental health, and engagement in social activities and in healthy and adaptive behaviors. However, findings also suggest ways of enriching the theoretical conceptualization of how AARC develops and offer insights into interpretation of responses to measures of AARC.
Abstract.
Author URL.
Quinn C, Gamble LD, Parker S, Martyr A, Collins R, Victor C, Dawson E, Hunt A, Pentecost C, Allan L, et al (2022). Impact of COVID‐19 on carers of people with dementia in the community: Findings from the British IDEAL cohort.
International Journal of Geriatric Psychiatry,
37(5).
Abstract:
Impact of COVID‐19 on carers of people with dementia in the community: Findings from the British IDEAL cohort
AbstractObjectiveUnpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID‐19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID‐19 pandemic on carers for community‐dwelling people with dementia and compare responses with pre‐pandemic data.MethodsData were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort and data were collected either through the telephone, video conferencing, or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort collected pre‐pandemic. Analyses were conducted for the full sample of carers and spousal/partner carers only.ResultsIn total 48.8% of carers thought their healthcare needs were negatively affected during the pandemic. Compared with pre‐pandemic data carers were more lonely and experienced less life satisfaction. There was little impact on carers' experience of caregiving, although carers felt trapped in their caregiving role. Carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Most carers coped very or fairly well during the pandemic. There was little difference in the experiences of spousal/partner carers and the full sample.ConclusionsAfter a long period of providing care under pandemic conditions carers require additional support. This support needs to be focused on alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care, particularly resuming face‐to‐face appointments.
Abstract.
Choi A, Martyr A, Clare L, Fossey J, Khan Z, McDermid J, Ballard C (2022). Impact of Psychotic Symptoms and Concurrent Neuropsychiatric Symptoms on the Quality of Life of People with Dementia Living in Nursing Homes.
J Am Med Dir Assoc,
23(9), 1474-1479.e1.
Abstract:
Impact of Psychotic Symptoms and Concurrent Neuropsychiatric Symptoms on the Quality of Life of People with Dementia Living in Nursing Homes.
OBJECTIVES: the aim of the present study was to determine whether psychotic symptoms in people with dementia (PwD) living in nursing homes were associated with reduced quality of life and to understand the additional impact of other concurrent neuropsychiatric symptoms on QoL. DESIGN: Cross-sectional cohort study (using data from WHELD cohort). SETTINGS AND PARTICIPANTS: 971 PwD living in nursing homes participating in the WHELD study. METHODS: the Neuropsychiatric Inventory-Nursing Home (NPI-NH) version was completed by informant interview. We compared mean differences in proxy-rated QoL scores (DEMQOL-Proxy) for PwD experiencing or not experiencing delusions and for PwD experiencing or not experiencing hallucinations. Backward multiple regression was used to determine the added contributions of agitation (Cohen-Mansfield Agitation Inventory), anxiety (NPI-NH-Anxiety), depression (Cornell Scale for Depression in Dementia), dementia severity (Clinical Dementia Rating-sum of boxes score), pain (Abbey Pain Scale), and antipsychotic prescription. Mediation analysis was conducted for agitation, anxiety, and depression. RESULTS: Presence of both delusions (P <. 001, B = -8.39) and hallucinations (P <. 001, B = -7.78) was associated with poorer QoL. Both associations remained significant after controlling for other factors. Agitation, anxiety, and depression partially mediated the relationship between each psychotic symptom and QoL. CONCLUSIONS AND IMPLICATIONS: Delusions and hallucinations in PwD are associated with poorer QoL among PwD living in nursing homes. The effects remain significant after adjusting for confounding variables. Direct effects of each symptom maintained significance despite significant mediation by concurrent neuropsychiatric symptoms.
Abstract.
Author URL.
van Horik JO, Collins R, Martyr A, Henderson C, Jones RW, Knapp M, Quinn C, Thom JM, Victor C, Clare L, et al (2022). Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort.
International Journal of Geriatric Psychiatry,
37(3).
Abstract:
Limited receipt of support services among people with mild‐to‐moderate dementia: Findings from the IDEAL cohort
AbstractBackgroundGlobal initiatives that promote public health responses to dementia have resulted in numerous countries developing new national policies. Current policy guidelines in England, for example, recommend that people diagnosed with mild‐to‐moderate dementia receive information and psychosocial interventions to improve their ability to ‘live well’. However, it remains unclear to what extent these recommendations are being achieved.MethodsSelf‐reported information from 1537 people living with dementia and informant‐reported information from 1277 carers of people living with dementia was used to quantify receipt of community‐based dementia support services, including health and social care services provided by statutory or voluntary‐sector organisations, in Britain from 2014 to 2016. Demographic factors associated with differences in receipt of support services were also investigated to identify particularly vulnerable groups of people living with dementia.ResultsBoth self‐ and informant reports suggested that approximately 50% of people living with dementia received support services for dementia. Receipt of support services was lower among people living with dementia who are older, female, and have fewer educational qualifications. Receipt of support services also differed according to diagnosis and carer status, but was unrelated to marital status.ConclusionsLimited receipt of dementia support services among people living with dementia in Britain provides a baseline to assess the efficacy of current policy guidelines regarding provision of information and support. Targeted efforts to facilitate receipt of support services among the particularly vulnerable groups identified in the current study could improve the efficacy of dementia support services both in Britain and internationally, and should inform policy development.
Abstract.
Clare L, Gamble LD, Martyr A, Sabatini S, Nelis SM, Quinn C, Pentecost C, Victor C, Jones RW, Jones IR, et al (2022). Longitudinal Trajectories of Quality of Life Among People with Mild-to-Moderate Dementia: a Latent Growth Model Approach with IDEAL Cohort Study Data.
J Gerontol B Psychol Sci Soc Sci,
77(6), 1037-1050.
Abstract:
Longitudinal Trajectories of Quality of Life Among People with Mild-to-Moderate Dementia: a Latent Growth Model Approach with IDEAL Cohort Study Data.
OBJECTIVES: We aimed to examine change over time in self-rated quality of life (QoL) in people with mild-to-moderate dementia and identify subgroups with distinct QoL trajectories. METHODS: We used data from people with mild-to-moderate dementia followed up at 12 and 24 months in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study (baseline n = 1,537). A latent growth model approach examined mean change over time in QoL, assessed with the QoL-AD scale, and investigated associations of baseline demographic, cognitive, and psychological covariates with the intercept and slope of QoL. We employed growth mixture modeling to identify multiple growth trajectories. RESULTS: Overall mean QoL scores were stable and no associations with change over time were observed. Four classes of QoL trajectories were identified: 2 with higher baseline QoL scores, labeled Stable (74.9%) and Declining (7.6%), and 2 with lower baseline QoL scores, labeled Stable Lower (13.7%) and Improving (3.8%). The Declining class had higher baseline levels of depression and loneliness, and lower levels of self-esteem and optimism, than the Stable class. The Stable Lower class was characterized by disadvantage related to social structure, poor physical health, functional disability, and low psychological well-being. The Improving class was similar to the Stable Lower class but had lower cognitive test scores. DISCUSSION: Understanding individual trajectories can contribute to personalized care planning. Efforts to prevent decline in perceived QoL should primarily target psychological well-being. Efforts to improve QoL for those with poorer QoL should additionally address functional impairment, isolation, and disadvantage related to social structure.
Abstract.
Author URL.
Collins R, Hunt A, Quinn C, Martyr A, Pentecost C, Clare L (2022). Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme.
Dementia,
21(4), 1135-1153.
Abstract:
Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: Findings from the IDEAL programme
Objectives Dementia can affect language processing and production, making communication more difficult. This creates challenges for including the person’s perspective in research and service evaluation. This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dementia and support the inclusion of their perspectives. Methods This qualitative study was conducted as part of the IDEAL programme and involved in-depth, semi-structured interviews with 17 dementia research and/or care professionals with expertise in communication. Transcripts were analysed using framework analysis. Findings Three main themes each with sub-themes were identified: (1) Awareness, knowledge and experience; (2) Communication approach and (3) Personalization. A person-centred orientation based on getting to know the participant and developing a bi-directional exchange formed the fundamental context for effective communication. Building on this foundation, an approach using pictures, photographs or objects that are meaningful to the person and appropriate for that person’s preferences and ability could help to facilitate conversations. The findings were integrated into a diagram illustrating how the topics covered by the themes interrelate to facilitate communication. Conclusions Useful skills and approaches were identified to help researchers engage and work with people with moderate-to-severe dementia and ensure their perspective is included. These covered getting to know the participant, using a variety of tangible tools and interactional techniques and considering the environment and context of the conversation.
Abstract.
Sabatini S, Bennett HQ, Martyr A, Collins R, Gamble LD, Matthews FE, Pentecost C, Dawson E, Hunt A, Parker S, et al (2022). Minimal Impact of COVID-19 Pandemic on the Mental Health and Wellbeing of People Living with Dementia: Analysis of Matched Longitudinal Data from the IDEAL Study. Frontiers in Psychiatry, 13
Quinn C, Toms G, Rippon I, Nelis SM, Henderson C, Morris RG, Rusted JM, Thom JM, van den Heuvel E, Victor C, et al (2022). Positive experiences in dementia care-giving: findings from the IDEAL programme.
AGEING & SOCIETY Author URL.
Martyr A, Gamble LD, Nelis SM, Collins R, Alexander CM, Morris RG, Quinn C, Pentecost C, Rusted JM, Victor C, et al (2022). Predictors of Awareness of Functional Ability in People with Dementia: the Contribution of Personality, Cognition, and Neuropsychiatric Symptoms – Findings from the IDEAL Program.
Dementia and Geriatric Cognitive Disorders,
51(3), 221-232.
Abstract:
Predictors of Awareness of Functional Ability in People with Dementia: the Contribution of Personality, Cognition, and Neuropsychiatric Symptoms – Findings from the IDEAL Program
<b><i>Introduction:</i></b> Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). <b><i>Methods:</i></b> Two measures of ADL (Functional Activities Questionnaire; Dependence Scale) were completed by 1,227 PwD and their informants in the IDEAL cohort study baseline assessment. Self-rated and informant-rated scores were used to calculate discrepancies, which were used as an indicator of awareness of functional ability. Smaller discrepancy scores were considered to reflect greater awareness on the part of PwD. PwD completed questionnaires on depression, personality, comorbidities, neuropsychiatric symptoms, and completed a measure of cognition. Informants provided ratings of stress. Univariable and multiple regressions were used to investigate factors related to ADL discrepancy. <b><i>Results:</i></b> a similar pattern of associations were found for both ADL discrepancy scores. Smaller discrepancy scores were associated with higher levels of depression, higher neuroticism, fewer neuropsychiatric symptoms, higher comorbidity, lower carer stress, and receipt of less than 1 hour of care per day from the informant. <b><i>Discussion/Conclusion:</i></b> There was a clear pattern of factors that were associated with greater awareness for both measures of functional ability. These factors associated with smaller discrepancy scores could be used to identify PwD who might benefit from targeted interventions to support their independence.
Abstract.
Clare L, Gamble LD, Martyr A, Quinn C, Litherland R, Morris RG, Jones IR, Matthews FE (2022). Psychological processes in adapting to dementia: Illness representations among the IDEAL cohort. Psychology and Aging, 37(4), 524-541.
Henderson C, Knapp M, Martyr A, Gamble LD, Nelis SM, Quinn C, Pentecost C, Collins R, Wu Y-T, Jones IR, et al (2022). The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort.
Journal of Alzheimer's Disease,
86(1), 135-153.
Abstract:
The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort
Background: the drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: to characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014–2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1,537 community-dwelling participants with dementia at Wave 1, 1,199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson’s disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.
Abstract.
Clare L, Gamble LD, Martyr A, Sabatini S, Nelis SM, Quinn C, Pentecost C, Victor C, Jones RW, Jones IR, et al (2022). “Living Well” Trajectories Among Family Caregivers of People with Mild-to-Moderate Dementia in the IDEAL Cohort.
The Journals of Gerontology: Series B,
77(10), 1852-1863.
Abstract:
“Living Well” Trajectories Among Family Caregivers of People with Mild-to-Moderate Dementia in the IDEAL Cohort
Abstract
.
. Objectives
. Understanding whether and how caregivers’ capability to “live well” changes over time, and the factors associated with change, could help target effective caregiver support.
.
.
. Methods
. We analyzed 3 time points (12 months apart) of Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort data from coresident spouse caregivers of community-dwelling individuals who had mild-to-moderate dementia at baseline, using latent growth and growth mixture models. Capability to “live well” was derived from measures of quality of life, well-being, and satisfaction with life.
.
.
. Results
. Data from 995 spouse caregivers at Time 1, 780 at Time 2, and 601 at Time 3 were included. The mean “living well” score decreased slightly over time. We identified 3 classes of caregivers: one with higher baseline scores declining slightly over time (Stable; 66.8%), one with low baseline scores remaining stable (Lower Stable; 26.0%), and one with higher baseline scores showing marked decline (Declining; 7.2%). Scores on baseline measures differentiated the Lower Stable, but not the Declining, from the Stable class. Longitudinally, the Declining class was associated with care recipient cognitive decline and increasing hours providing care, as well as caregiver stress and depression. Findings were similar when caregivers with other kin relationships were included.
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.
. Discussion
. The findings indicate the importance of prompt identification of, and support for, caregivers at risk of the declining capability to “live well” and may assist in identifying those caregivers who could benefit most from targeted support.
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Abstract.
Cox KL, Clare L, Cyarto EV, Ellis KA, Etherton-Beer C, Southam J, Ames D, Flicker L, Almeida OP, LoGiudice D, et al (2021). A Randomized Controlled Trial on the Effects of a 6-Month Home-Based Physical Activity Program with Individual Goal-Setting and Volunteer Mentors on Physical Activity, Adherence, and Physical Fitness in Inactive Older Adults at Risk of Cognitive Decline: the INDIGO Study.
Journal of Alzheimer's Disease,
84(1), 207-226.
Abstract:
A Randomized Controlled Trial on the Effects of a 6-Month Home-Based Physical Activity Program with Individual Goal-Setting and Volunteer Mentors on Physical Activity, Adherence, and Physical Fitness in Inactive Older Adults at Risk of Cognitive Decline: the INDIGO Study
Background: Increasing physical activity (PA) in those who have memory concerns requires innovative approaches. Objective: to compare in this randomized controlled trial (RCT) the effects on PA, adherence, and fitness of two approaches to deliver a 6-month home-based PA program in older, inactive individuals at risk of cognitive decline. Methods: Individuals (n = 52) aged 60–85 years, inactive with mild cognitive impairment or subjective cognitive decline were recruited from the community and memory clinics. Randomization was to 6 months of 150 min/week moderate intensity PA with either: goal-setting with mentor support; or education and peer contact. A subset of participants (n = 36) continued for a further 6 months. PA, moderate and vigorous PA, and secondary outcomes, fitness, goal performance/satisfaction and self-efficacy were assessed at baseline, 6 and 12 months. Modelling of primary and secondary outcomes was conducted with linear mixed models. Results: Participants were mean age (±sd) 70.1 (6.4) years. Six-month retention was 88.5%(n = 46). No significant between-group differences were observed for PA or fitness. Post-hoc combined group data showed a significant, moderate-large effect size increase in PA with time. PA increased by a mean 1,662 (943, 2383) steps/day (95%CI) and 1,320 (603, 2037) steps/day at 6 and 12 months (p < 0.001). Median (quartiles Q1-Q3) 6 and 6–12 month combined group adherence was 88.9 (74.4–95.7)%and 84.6 (73.9–95.4)%respectively. Conclusion: in this target group, no differences were detected between groups both intervention strategies were highly effective in increasing PA and fitness.
Abstract.
Sabatini S, Ballard C, Clare L, Collins R, Ukoumunne O (2021). Associations of subjective cognitive and memory decline with depression, anxiety, and two-year change in objectively-assessed global cognition and memory. Aging, Neuropsychology and Cognition: a Journal on Normal and Dysfunctional Development
O'Shaughnessy NJ, Chan JE, Bhome R, Gallagher P, Zhang H, Clare L, Sampson EL, Stone P, Huntley J (2021). Awareness in severe Alzheimer's disease: a systematic review.
Aging Ment Health,
25(4), 602-612.
Abstract:
Awareness in severe Alzheimer's disease: a systematic review.
Objective: There is limited understanding about how people in the severe stages of Alzheimer's disease (AD) experience and demonstrate awareness. We synthesised all available evidence with the aim of understanding how awareness is preserved or impaired in severe AD and what evidence there is for different levels of awareness according to the levels of awareness framework.Method: a systematic search of the following databases: Embase, PsycINFO, MEDLINE and Web of Science was carried out. A narrative synthesis and analysis was conducted of all included studies. All studies were assessed for quality using the AXIS and CASP tools.Results: Our findings suggest that lower level sensory awareness is relatively maintained in severe AD. Findings for higher level awareness are variable and this may be related to the diversity of methods that have been used to explore awareness in these circumstances.Conclusion: Awareness is complex, heterogeneous and varies significantly between individuals. Environmental and contextual factors have a significant impact on whether awareness is observed in people with severe AD. Adaptation of the environment has the potential to facilitate the expression of awareness while education of caregivers may increase understanding of people with severe AD and potentially improve the quality of care that is received.
Abstract.
Author URL.
Sabatini S, Ukoumunne O, Ballard C, Collins R, Corbett A, Brooker H, Clare L (2021). Cross-sectional and longitudinal associations between subjective sleep difficulties and self-perceptions of aging. Behavioral Sleep Medicine
Quinn C, Hart N, Henderson C, Litherland R, Pickett J, Clare L (2021). Developing supportive local communities: Perspectives from people with dementia and caregivers participating in the IDEAL programme. Journal of Aging & Social Policy, 34(6), 839-859.
Alexander CM, Martyr A, Gamble LD, Savage SA, Quinn C, Morris RG, Collins R, Clare L (2021). Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme.
BMC Geriatrics,
21(1).
Abstract:
Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme
Abstract
. Background
. People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress.
.
. Methods
. This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress.
.
. Results
. There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness.
.
. Conclusions
. Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.
.
Abstract.
Martyr A, Nelis SM, Quinn C, Wu YT, Lamont RA, Henderson C, Clarke R, Hindle JV, Thom JM, Jones IR, et al (2021). Erratum: Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia - CORRIGENDUM (Psychological medicine (2018) 48 13 (2130-2139)). Psychological medicine, 51(9).
Clare L, Martyr A, Gamble LD, Pentecost C, Collins R, Dawson E, Hunt A, Parker S, Allan L, Burns A, et al (2021). Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort. Journal of Alzheimer’s Disease
Morgan-Trimmer S, Kudlicka A, Warmoth K, Leroi I, Oyebode JR, Pool J, Woods R, Clare L (2021). Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis.
BMJ Open,
11(10), e051255-e051255.
Abstract:
Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis
ObjectivesHealthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of ‘self-organisation’ can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer’s and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment.DesignA process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Analysis adopted a critical realist perspective and a deductive-inductive approach to identify patterns in how the intervention operated.SettingThe GREAT intervention was delivered through home visits by therapists, in eight regions in the UK.ParticipantsSix therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed.InterventionA 16-week cognitive rehabilitation programme for people with mild-to-moderate dementia.Results‘Self-organisation’ of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of ‘social support’. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation.ConclusionsResearchers are increasingly adopting complexity theory to understand interventions. This study extends the application of complexity theory by demonstrating how ‘self-organisation’ was a useful concept for understanding aspects of the intervention that would have been missed by focusing on formal intervention components. Analysis of self-organisation could enhance future process evaluations and implementation studies.Trial registration numberISRCTN21027481.
Abstract.
Quinn C, Pickett JA, Litherland R, Morris RG, Martyr A, Clare L (2021). Living well with dementia: What is possible and how to promote it.
International Journal of Geriatric Psychiatry,
37(1).
Abstract:
Living well with dementia: What is possible and how to promote it
Key points
The focus on living well with dementia encourages a more positive and empowering approach
The right support can improve the experience of living with dementia
An holistic approach to assessing the needs of people with dementia and identifying the factors that impact on their well‐being is essential
Enabling people to live better requires a broad approach that encompasses both health and social systems and the wider community
Abstract.
O'Rourke G, Pentecost C, van den Heuvel E, Victor C, Quinn C, Hillman A, Litherland R, Clare L (2021). Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort. Ageing and Society
Alexander CM, Martyr A, Savage SA, Morris RG, Clare L (2021). Measuring Awareness in People with Dementia: Results of a Systematic Scoping Review.
J Geriatr Psychiatry Neurol,
34(5), 335-348.
Abstract:
Measuring Awareness in People with Dementia: Results of a Systematic Scoping Review.
BACKGROUND: Awareness of the diagnosis or related changes in functioning varies in people with dementia (PwD), with implications for the well-being of PwD and their carers. Measuring awareness in a clinical setting could facilitate tailored support and optimize involvement in personal health and care decisions. This scoping review aimed to identify validated methods of assessing awareness in dementia and appraise their clinical utility. METHOD: a systematic search was conducted of English-language publications that measured awareness in PwD, in 6 electronic databases. Search terms included dement*, Alzheimer*, Pick disease, and awareness, unawareness, anosognosia, insight, denial, metacognit*, or discrepanc. RESULTS: We screened 30,634 articles, finding 345 articles that met our inclusion criteria. We identified 76 measures, most commonly using a discrepancy questionnaire comparing evaluations of function by PwD and an informant. There were 30 awareness measures developed and validated for use in dementia populations but few designed for general clinical use. CONCLUSIONS: Although we found a range of clinical indications for measuring awareness, there were few studies investigating clinical applications and few tools designed for clinical purposes. Further investigation and development of a person-centered tool could facilitate health and care choices in mild-to-moderate dementia.
Abstract.
Author URL.
Delgado J, Jones L, Bradley MC, Allan LM, Ballard C, Clare L, Fortinsky RH, Hughes CM, Melzer D (2021). Potentially inappropriate prescribing in dementia, multi-morbidity and incidence of adverse health outcomes.
Age Ageing,
50(2), 457-464.
Abstract:
Potentially inappropriate prescribing in dementia, multi-morbidity and incidence of adverse health outcomes.
IMPORTANCE: treatment of dementia in individuals with comorbidities is complex, leading to potentially inappropriate prescribing (PIP). The impact of PIP in this population is unknown. OBJECTIVE: to estimate the rate of PIP and its effect on adverse health outcomes (AHO). DESIGN: retrospective cohort. SETTING: primary care electronic health records linked to hospital discharge data from England. SUBJECTS: 11,175 individuals with dementia aged over 65 years in 2016 and 43,463 age- and sex-matched controls. METHODS: Screening Tool of Older Persons' Prescriptions V2 defined PIP. Logistic regression tested associations with comorbidities at baseline, and survival analyses risk of incident AHO, adjusted for age, gender, deprivation and 14 comorbidities. RESULTS: the dementia group had increased risk of PIP (73% prevalence; odds ratio [OR]: 1.92; confidence interval [CI]: 83-103%; P
Abstract.
Author URL.
Thom JM, Nelis SM, Cooney JK, Hindle JV, Jones IR, Clare L (2021). Promotion of healthy aging within a community center through behavior change: Health and fitness findings from the agewell pilot randomized controlled trial.
Journal of Aging and Physical Activity,
29(1), 80-88.
Abstract:
Promotion of healthy aging within a community center through behavior change: Health and fitness findings from the agewell pilot randomized controlled trial
The purpose of this randomized controlled trial was to determine if behavior change through individual goal setting (GS) could promote healthy aging, including health and fitness benefits in older adults who attended a community “AgeWell” Center for 12 months. Seventy-five older adults were randomly allocated to either a control or a GS group. Health outcomes were measured at baseline and after 12 months of the participants’ having access to the exception of Agewell Center facilities. The findings demonstrate that participation in the Center in itself was beneficial, with improved body composition and reduced cardiovascular risk in both groups (p <. 05), and that this kind of community-based resource offers valuable potential for promoting protective behaviors and reducing health risk. However, a specific focus on identifying individual behavior change goals was required in order to achieve increased activity engagement (p <. 05) and to bring about more substantial improvements in a range of health, diet, and physical function measures (p <. 05).
Abstract.
Wu Y-T, Clare L, Matthews FE (2021). Relationship between depressive symptoms and capability to live well in people with mild to moderate dementia and their carers: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme.
Aging Ment Health,
25(1), 38-45.
Abstract:
Relationship between depressive symptoms and capability to live well in people with mild to moderate dementia and their carers: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme.
OBJECTIVES: Depression is a common condition in dementia and has a substantial impact on quality of life and wellbeing. There is limited evidence on how depressive symptoms in the person with dementia impact on the carer, and vice versa. The aim of this study is to investigate dyadic relationships between depressive symptoms and capability to live well in both people with dementia and their carers and to examine whether people with dementia who do not have a carer are more vulnerable to the impact of depressive symptoms than those who have a carer. METHODS: Using a large cohort study of 1547 community-dwelling people with mild to moderate dementia and 1283 carers in Great Britain, a Bayesian analysis framework was developed to incorporate dyads (N = 981), people with dementia whose carers did not participate (N = 127), people with dementia who did not have a carer (N = 137), and dyads with missing data (N = 302) and estimate actor and partner relationships between depressive symptoms and capability to live well, which was expressed as a latent factor derived from measures of quality of life, life satisfaction and wellbeing. RESULTS: Depressive symptoms in people with dementia and carers had negative associations with capability to live well both for the individual and for the partner. Compared to those who had a carer, depressive symptoms had a greater impact on capability to live well in people with dementia who did not had a carer. CONCLUSIONS: the impact of depression may extend beyond the person experiencing the symptoms. Future interventions for depressive symptoms should utilise this potential wider impact to understand and optimise treatment effects.
Abstract.
Author URL.
Sabatini S, Ukoumunne OC, Martyr A, Ballard C, Lamont RA, Collins R, Pentecost C, Hunt A, Quinn C, Thom JM, et al (2021). Relationship between self-perceptions of aging and ‘living well’ among people with mild-to-moderate dementia: Findings from the ideal programme. Archives of Gerontology and Geriatrics, 94, 104328-104328.
Burbaite A, Leeworthy S, Hirst L, Mioshi E, Clare L, Ahmed S (2021). Suitability of memory aids and strategies for people with posterior cortical atrophy: Protocol for a scoping review.
Alzheimer's & dementia : the journal of the Alzheimer's Association,
17Abstract:
Suitability of memory aids and strategies for people with posterior cortical atrophy: Protocol for a scoping review
BACKGROUND: Posterior cortical atrophy (PCA) is a neurodegenerative syndrome characterised by a progressive visuospatial and visuoperceptual impairment. Recent research shows that memory impairment can also occur as an early symptom of the condition and, critically, can be ameliorated by providing support in the memory recall phase. There are currently no guidelines for which memory strategies may be suitable in PCA. Due to the central visual disorder that defines PCA, careful consideration is needed when choosing such strategies. METHOD: a scoping review will be conducted of published studies that have assessed memory aids and strategies in people with Alzheimer's disease and related dementias where memory is considered a core or supplementary feature, with the aim of distinguishing those that may be suitable or adaptable for PCA. The systematic search will include the electronic databases Medline, PsycINFO and CINAHL, using search terms for dementia (such as. DEMENTIA/ and alzheimer*) and memory aids and strategies (such as memory strateg*, memory aid*, assistive technolog*). RESULT: Preliminary database searches identified 1567 citations, that will be screened to choose articles eligible for full text review based on title and abstract. Reference lists will be used to identify further relevant studies. Data will be extracted by two reviewers using Mendeley. CONCLUSION: the scoping review will give an overview of the memory aids and strategies used in people with Alzheimer's disease and related dementias, and identify characteristics, modality and pragmatics to evaluate their suitability and adaptability for a PCA population. Tailored memory support strategies for people living with PCA could improve memory performance, which in turn would minimise negative patient and carer outcomes.
Abstract.
Choi A, Ballard C, Martyr A, Collins R, Morris RG, Clare L (2021). The impact of auditory hallucinations on “living well” with dementia: Findings from the IDEAL programme.
International Journal of Geriatric Psychiatry,
36(9), 1370-1377.
Abstract:
The impact of auditory hallucinations on “living well” with dementia: Findings from the IDEAL programme
AbstractObjectiveTo determine whether auditory hallucinations in community‐dwelling people with dementia (PwD) living in the community impacted on quality of life (QoL), subjective wellbeing and life satisfaction.DesignCross‐sectional cohort study.Settings and participants1251 community‐dwelling PwD and caregivers were included in this study.MeasuresNeuropsychiatric Inventory Questionnaire completed by caregiver interview. Mean differences between the absence and presence of auditory hallucinations were compared to scores on three validated measures of living well: QoL in Alzheimer's disease scale (QoL‐AD), World Health Organization‐Five Well‐being Index and Satisfaction with Life Scale. Analysis of covariance determined the confounding contributions of cognition via Mini‐Mental State Examination, depression via Geriatric Depression Scale‐10, caregiver stress via Relative Stress Scale and whether antipsychotic drugs were prescribed.ResultsAuditory hallucinations were associated with lower scores for QoL (p < 0.001, η2 = 0.01), wellbeing (p < 0.001, η2 = 0.02) and life satisfaction (p < 0.001, η2 = 0.01). After controlling for background measures, which were potential confounds, the relationship between auditory hallucinations and QoL (p = 0.04, pη2 = 0.01) and wellbeing (p < 0.000, pη2 = 0.02) remained significant but there was no significant association with life satisfaction.ConclusionAuditory hallucinations are associated with lower QoL and wellbeing in PwD living in the community. This has implications for targeted therapies in PwD with psychotic symptoms.
Abstract.
Weetch J, O'Dwyer S, Clare L (2021). The involvement of people with dementia in advocacy: a systematic narrative review.
Aging Ment Health,
25(9), 1595-1604.
Abstract:
The involvement of people with dementia in advocacy: a systematic narrative review.
METHODS: a systematic search and narrative synthesis of original research was conducted. Searches in Pubmed, Web of Science, PsychINFO and CINAHL followed PRISMA Guidelines. The review focused on people with dementia involved in advocacy. There were no restrictions based on study design or date. Language was limited to English. RESULTS: Seven papers were identified, with predominantly qualitative methodologies. Four overarching themes were identified: threats, fighting back, evolving identities and making a difference. Threats ranged from those arising from dementia as an illness, to exposure to stigma. Fighting back represented advocates' response to these threats, often described using martial metaphors. Evolving identities captured advocates' journeys through diagnosis to involvement in advocacy and subsequent impact upon identity. Making a difference represented the impact of dementia advocacy at an individual, community and societal level. CONCLUSIONS: This review confirms that the threats associated with dementia extend beyond the symptoms of illness. Dementia advocacy offers potential improvements in well-being for those involved, through the activity itself and via extended social networks. There is little research on broader aspects of advocates' identity, including ethnicity, gender, and age. There has been little attempt to quantify the impact of dementia advocacy.
Abstract.
Author URL.
Victor CR, Rippon I, Quinn C, Martyr A, Clare L (2021). The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme.
International Journal of Care and Caring,
5(3), 447-467.
Abstract:
The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme
We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to ‘living well’. We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Initiatives that increase support or engagement in the community or wider society may help to increase carers’ perceptions of their social status, enhancing their ability to ‘live well’.
Abstract.
Talbot CV, O’Dwyer ST, Clare L, Heaton J (2021). The use of Twitter by people with young-onset dementia: a qualitative analysis of narratives and identity formation in the age of social media.
Dementia,
20(7), 2542-2557.
Abstract:
The use of Twitter by people with young-onset dementia: a qualitative analysis of narratives and identity formation in the age of social media
a diagnosis of dementia in midlife can be challenging, causing losses or changes in a person’s identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users’ perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a ‘typical’ manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.
Abstract.
Sikkes SAM, Tang Y, Jutten RJ, Wesselman LMP, Turkstra LS, Brodaty H, Clare L, Cassidy-Eagle E, Cox KL, Chételat G, et al (2021). Toward a theory-based specification of non-pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations.
Alzheimers Dement,
17(2), 255-270.
Abstract:
Toward a theory-based specification of non-pharmacological treatments in aging and dementia: Focused reviews and methodological recommendations.
INTRODUCTION: Non-pharmacological treatments (NPTs) have the potential to improve meaningful outcomes for older people at risk of, or living with dementia, but research often lacks methodological rigor and continues to produce mixed results. METHODS: in the current position paper, experts in NPT research have specified treatment targets, aims, and ingredients using an umbrella framework, the Rehabilitation Treatment Specification System. RESULTS: Experts provided a snapshot and an authoritative summary of the evidence for different NPTs based on the best synthesis efforts, identified main gaps in knowledge and relevant barriers, and provided directions for future research. Experts in trial methodology provide best practice principles and recommendations for those working in this area, underscoring the importance of prespecified protocols. DISCUSSION: We conclude that the evidence strongly supports various NPTs in relation to their primary targets, and discuss opportunities and challenges associated with a unifying theoretical framework to guide future efforts in this area.
Abstract.
Author URL.
Kelly M, Nelis S, Martyr A, Gamble LD, Clare L (2021). Trajectories of socio-emotional functioning in early-stage dementia: implications for the individual with dementia and their family carer. Aging & Mental Health, 26(5), 1069-1077.
Sabatini S, Ukoumunne OC, Ballard C, Collins R, Kim S, Corbett A, Aarsland D, Hampshire A, Brooker H, Clare L, et al (2021). What does feeling younger or older than one’s chronological age mean to men and women? Qualitative and quantitative findings from the PROTECT study. Psychology & Health, 38(3), 324-347.
Henley J, Hillman A, Jones IR, Woods B, MacLeod CA, Pentecost C, Clare L (2021). ‘We're happy as we are’: the experience of living with possible undiagnosed dementia.
Ageing and Society,
43(9), 2041-2066.
Abstract:
‘We're happy as we are’: the experience of living with possible undiagnosed dementia
AbstractIt is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.
Abstract.
Vatter S, McDonald KR, Stanmore E, McCormick SA, Clare L, Leroi I (2020). A brief psychometric and clinimetric evaluation of self-report burden and mental health measures completed by care partners of people with Parkinson's-related dementia.
Int Psychogeriatr,
32(7), 875-880.
Abstract:
A brief psychometric and clinimetric evaluation of self-report burden and mental health measures completed by care partners of people with Parkinson's-related dementia.
This report describes the evaluation of the psychometric and clinimetric properties of nine self-report measures completed by informal care partners of individuals with mild cognitive impairment or dementia in Parkinson's disease and dementia with Lewy bodies. One hundred thirty-six care partners completed measures on relationship satisfaction, burden, stress, mood, resilience, health, quality of life, and feelings related to care provision. Psychometric properties, such as internal consistency, convergent validity, floor and ceiling effects, completion rate and data missingness, as well as clinimetric properties, such as time to administer, ease of scoring, readability and availability of the scales, were examined. Additionally, the design of the measure development studies was assessed with the 2018 COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Risk of Bias checklist. Participants were mostly married women (>85%) with a mean age of 69.4 years. The methodological quality of the design of all measure development studies was "inadequate." Five widely applied measures (Zarit Burden Interview, Hospital Anxiety and Depression Scale, Short Form 12 Health Survey, Relatives' Stress Scale, and EuroQoL-5D) and two less researched instruments (Brief Resilience Scale and Relationship Satisfaction Scale) had high internal consistency and completion rates, moderate to strong convergent validity, low missingness and floor effects, and excellent clinical utility ratings. Two scales (Dyadic Relationship Scale and Family Caregiving Role) received poor psychometric ratings, and their usage among informal care partners is not recommended. In conclusion, well-validated and widely used measures received strong psychometric and clinimetric ratings. Future studies are required to determine the most reliable, valid and robust caregiver-reported measures.
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Author URL.
Lourida I, Gwernan-Jones R, Abbott R, Rogers M, Green C, Ball S, Hemsley A, Cheeseman D, Clare L, Moore D, et al (2020). Activity interventions to improve the experience of care in hospital for people living with dementia: a systematic review.
BMC Geriatr,
20(1).
Abstract:
Activity interventions to improve the experience of care in hospital for people living with dementia: a systematic review.
BACKGROUND: an increasingly high number of patients admitted to hospital have dementia. Hospital environments can be particularly confusing and challenging for people living with dementia (Plwd) impacting their wellbeing and the ability to optimize their care. Improving the experience of care in hospital has been recognized as a priority, and non-pharmacological interventions including activity interventions have been associated with improved wellbeing and behavioral outcomes for Plwd in other settings. This systematic review aimed at evaluating the effectiveness of activity interventions to improve experience of care for Plwd in hospital. METHODS: Systematic searches were conducted in 16 electronic databases up to October 2019. Reference lists of included studies and forward citation searching were also conducted. Quantitative studies reporting comparative data for activity interventions delivered to Plwd aiming to improve their experience of care in hospital were included. Screening for inclusion, data extraction and quality appraisal were performed independently by two reviewers with discrepancies resolved by discussion with a third where necessary. Standardized mean differences (SMDs) were calculated where possible to support narrative statements and aid interpretation. RESULTS: Six studies met the inclusion criteria (one randomized and five non-randomized uncontrolled studies) including 216 Plwd. Activity interventions evaluated music, art, social, psychotherapeutic, and combinations of tailored activities in relation to wellbeing outcomes. Although studies were generally underpowered, findings indicated beneficial effects of activity interventions with improved mood and engagement of Plwd while in hospital, and reduced levels of responsive behaviors. Calculated SMDs ranged from very small to large but were mostly statistically non-significant. CONCLUSIONS: the small number of identified studies indicate that activity-based interventions implemented in hospitals may be effective in improving aspects of the care experience for Plwd. Larger well-conducted studies are needed to fully evaluate the potential of this type of non-pharmacological intervention to improve experience of care in hospital settings, and whether any benefits extend to staff wellbeing and the wider ward environment.
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Author URL.
Sabatini S, Silarova B, Martyr A, Collins R, Ballard C, Anstey KJ, Kim S, Clare L (2020). Associations of Awareness of Age-Related Change with Emotional and Physical Well-being: a Systematic Review and Meta-analysis.
Gerontologist,
60(6), e477-e490.
Abstract:
Associations of Awareness of Age-Related Change with Emotional and Physical Well-being: a Systematic Review and Meta-analysis.
BACKGROUND AND OBJECTIVES: This systematic review aimed to synthesize and quantify the associations of awareness of age-related change (AARC) with emotional well-being, physical well-being, and cognitive functioning. RESEARCH DESIGN AND METHODS: We conducted a systematic review with a correlational random effects meta-analysis. We included quantitative studies, published from January 1, 2009 to October 3, 2018, exploring associations between AARC and one or more of the following outcomes: emotional well-being, physical well-being, and cognitive functioning. We assessed heterogeneity (I2) and publication bias. RESULTS: We included 12 studies in the review, 9 exploring the association between AARC and emotional well-being and 11 exploring the association between AARC and physical well-being. No study explored the association between AARC and cognitive functioning. Six articles were included in the meta-analysis. We found a moderate association between a higher level of AARC gains and better emotional well-being (r =. 33; 95% CI 0.18, 0.47; p
Abstract.
Author URL.
Vedel I, Sheets D, McAiney C, Clare L, Brodaty H, Mann J, Anderson N, Liu-Ambrose T, Rojas-Rozo L, Loftus L, et al (2020). CCCDTD5: Individual and community-based psychosocial and other non-pharmacological interventions to support persons living with dementia and their caregivers.
Alzheimer's and Dementia: Translational Research and Clinical Interventions,
6(1).
Abstract:
CCCDTD5: Individual and community-based psychosocial and other non-pharmacological interventions to support persons living with dementia and their caregivers
Introduction: Current pharmacological therapies for dementia have limited efficacy. Thus it is important to provide recommendations on individual and community-based psychosocial and non-pharmacological interventions for persons living with dementia (PLWDs) and their caregivers. Methods: Phase 1: a systematic review for developing recommendations on psychosocial and non-pharmacological interventions at the individual and community level for PLWDs and their caregivers. Phase 2: Rating of recommendations using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) guidelines. Phase 3: Delphi process (>50 dementia experts) for approving recommendations by the 5th Canadian Consensus Conference on the Diagnosis and Treatment of Dementia (CCCDTD5). Results: the CCCDTD5 approved the following recommendations: Exercise (1B) and group cognitive stimulation for PLWDs (2B), psychosocial and psychoeducational interventions for caregivers (2C), development of dementia friendly organization and communities (2C), and case management for PLWDs (2B). Discussion: the CCCDTD5 provides for the first time, evidence-based recommendations on psychosocial and non-pharmacological interventions for PLWDs and their caregivers that can inform evidence-based policies for PLWDs in Canada.
Abstract.
Vatter S, Stanmore E, Clare L, McDonald KR, McCormick SA, Leroi I (2020). Care Burden and Mental Ill Health in Spouses of People with Parkinson Disease Dementia and Lewy Body Dementia.
J Geriatr Psychiatry Neurol,
33(1), 3-14.
Abstract:
Care Burden and Mental Ill Health in Spouses of People with Parkinson Disease Dementia and Lewy Body Dementia.
OBJECTIVES: to explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). METHODS: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. RESULTS: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. CONCLUSION: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.
Abstract.
Author URL.
Quinn C, Nelis SM, Martyr A, Morris RG, Victor C, Clare L (2020). Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study.
Aging Ment Health,
24(9), 1505-1513.
Abstract:
Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study.
Objectives: the capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life.Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia.Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (-1.98; 95% CI: -2.89, -1.07), high perceived social restrictions (-2.04; 95% CI: -2.94, -1.14) and low caregiving competence (-2.01; 95% CI: -2.95, -1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia.Conclusion: the findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.
Abstract.
Author URL.
Bahar‐Fuchs A, Martyr A, Goh AMY, Sabates JM, Clare L (2020). Cognitive training for people with dementia: a Cochrane review. Alzheimer's & Dementia, 16(S7).
Bahar-Fuchs A, Martyr A, Goh AMY, Sabates J, Clare L (2020). Cognitive training for people with mild to moderate dementia: a Cochrane Review. BJPsych Advances, 26(2), 66-66.
Orgeta V, McDonald KR, Poliakoff E, Hindle JV, Clare L, Leroi I (2020). Cognitive training interventions for dementia and mild cognitive impairment in Parkinson's disease.
Cochrane Database Syst Rev,
2(2).
Abstract:
Cognitive training interventions for dementia and mild cognitive impairment in Parkinson's disease.
BACKGROUND: Approximately 60% to 80% of people with Parkinson's disease (PD) experience cognitive impairment that impacts on their quality of life. Cognitive decline is a core feature of the disease and can often present before the onset of motor symptoms. Cognitive training may be a useful non-pharmacological intervention that could help to maintain or improve cognition and quality of life for people with PD dementia (PDD) or PD-related mild cognitive impairment (PD-MCI). OBJECTIVES: to determine whether cognitive training (targeting single or multiple domains) improves cognition in people with PDD and PD-MCI or other clearly defined forms of cognitive impairment in people with PD. SEARCH METHODS: We searched the Cochrane Dementia and Cognitive Improvement Group Trials Register (8 August 2019), the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, CINAHL, and PsycINFO. We searched reference lists and trial registers, searched relevant reviews in the area and conference proceedings. We also contacted experts for clarifications on data and ongoing trials. SELECTION CRITERIA: We included randomised controlled trials where the participants had PDD or PD-MCI, and where the intervention was intended to train general or specific areas of cognitive function, targeting either a single domain or multiple domains of cognition, and was compared to a control condition. Multicomponent interventions that also included motor or other elements were considered eligible. DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles, abstracts, and full-text articles for inclusion in the review. Two review authors also independently undertook extraction of data and assessment of methodological quality. We used GRADE methods to assess the overall quality of the evidence. MAIN RESULTS: Seven studies with a total of 225 participants met the inclusion criteria for this review. All seven studies compared the effects of a cognitive training intervention to a control intervention at the end of treatment periods lasting four to eight weeks. Six studies included people with PD living in the community. These six studies recruited people with single-domain (executive) or multiple-domain mild cognitive impairment in PD. Four of these studies identified participants with MCI using established diagnostic criteria, and two included both people with PD-MCI and people with PD who were not cognitively impaired. One study recruited people with a diagnosis of PD dementia who were living in long-term care settings. The cognitive training intervention in three studies targeted a single cognitive domain, whilst in four studies multiple domains of cognitive function were targeted. The comparison groups either received no intervention or took part in recreational activities (sports, music, arts), speech or language exercises, computerised motor therapy, or motor rehabilitation combined with recreational activity. We found no clear evidence that cognitive training improved global cognition. Although cognitive training was associated with higher scores on global cognition at the end of treatment, the result was imprecise and not statistically significant (6 trials, 178 participants, standardised mean difference (SMD) 0.28, 95% confidence interval (CI) -0.03 to 0.59; low-certainty evidence). There was no evidence of a difference at the end of treatment between cognitive training and control interventions on executive function (5 trials, 112 participants; SMD 0.10, 95% CI -0.28 to 0.48; low-certainty evidence) or visual processing (3 trials, 64 participants; SMD 0.30, 95% CI -0.21 to 0.81; low-certainty evidence). The evidence favoured the cognitive training group on attention (5 trials, 160 participants; SMD 0.36, 95% CI 0.03 to 0.68; low-certainty evidence) and verbal memory (5 trials, 160 participants; SMD 0.37, 95% CI 0.04 to 0.69; low-certainty evidence), but these effects were less certain in sensitivity analyses that excluded a study in which only a minority of the sample were cognitively impaired. There was no evidence of differences between treatment and control groups in activities of daily living (3 trials, 67 participants; SMD 0.03, 95% CI -0.47 to 0.53; low-certainty evidence) or quality of life (5 trials, 147 participants; SMD -0.01, 95% CI -0.35 to 0.33; low-certainty evidence). There was very little information on adverse events. We considered the certainty of the evidence for all outcomes to be low due to risk of bias in the included studies and imprecision of the results. We identified six ongoing trials recruiting participants with PD-MCI, but no ongoing trials of cognitive training for people with PDD. AUTHORS' CONCLUSIONS: This review found no evidence that people with PD-MCI or PDD who receive cognitive training for four to eight weeks experience any important cognitive improvements at the end of training. However, this conclusion was based on a small number of studies with few participants, limitations of study design and execution, and imprecise results. There is a need for more robust, adequately powered studies of cognitive training before conclusions can be drawn about the effectiveness of cognitive training for people with PDD and PD-MCI. Studies should use formal criteria to diagnose cognitive impairments, and there is a particular need for more studies testing the efficacy of cognitive training in people with PDD.
Abstract.
Author URL.
Clare L, Martyr A, Morris RG, Tippett LJ (2020). Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort.
J Alzheimers Dis,
77(1), 127-138.
Abstract:
Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort.
BACKGROUND: the onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. OBJECTIVE: We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers. METHODS: We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement 'I feel I am the same person that I have always been'. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of 'living well', and caregiver stress. RESULTS: Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of 'living well'. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress. CONCLUSION: a significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to 'live well' with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.
Abstract.
Author URL.
Wu Y-T, Nelis SM, Quinn C, Martyr A, Jones IR, Victor CR, Knapp M, Henderson C, Hindle JV, Jones RW, et al (2020). Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme.
Age and Ageing,
49(3), 446-452.
Abstract:
Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme
Abstract
.
. Background
. a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain.
.
.
. Methods
. this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia.
.
.
. Results
. people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains.
.
.
. Conclusion
. although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.
.
Abstract.
Anstey KJ, Peters R, Zheng L, Barnes DE, Brayne C, Brodaty H, Chalmers J, Clare L, Dixon RA, Dodge H, et al (2020). Future Directions for Dementia Risk Reduction and Prevention Research: an International Research Network on Dementia Prevention Consensus.
J Alzheimers Dis,
78(1), 3-12.
Abstract:
Future Directions for Dementia Risk Reduction and Prevention Research: an International Research Network on Dementia Prevention Consensus.
In the past decade a large body of evidence has accumulated on risk factors for dementia, primarily from Europe and North America. Drawing on recent integrative reviews and a consensus workshop, the International Research Network on Dementia Prevention developed a consensus statement on priorities for future research. Significant gaps in geographical location, representativeness, diversity, duration, mechanisms, and research on combinations of risk factors were identified. Future research to inform dementia risk reduction should fill gaps in the evidence base, take a life-course, multi-domain approach, and inform population health approaches that improve the brain-health of whole communities.
Abstract.
Author URL.
Heaton J, Martyr A, Nelis SM, Marková IS, Morris RG, Roth I, Woods RT, Clare L (2020). Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them.
Ageing and Society,
41(11), 2660-2680.
Abstract:
Future outlook of people living alone with early-stage dementia and their non-resident relatives and friends who support them
AbstractLittle is known about the experiences of people living alone with dementia in the community and their non-resident relatives and friends who support them. In this paper, we explore their respective attitudes and approaches to the future, particularly regarding the future care and living arrangements of those living with dementia. The study is based on a qualitative secondary analysis of interviews with 24 people living alone with early-stage dementia in North Wales, United Kingdom, and one of their relatives or friends who supported them. All but four of the dyads were interviewed twice over 12 months (a total of 88 interviews). In the analysis, it was observed that several people with dementia expressed the desire to continue living at home for ‘as long as possible’. A framework approach was used to investigate this theme in more depth, drawing on concepts from the existing studies of people living with dementia and across disciplines. Similarities and differences in the future outlook and temporal orientation of the participants were identified. The results support previous research suggesting that the future outlook of people living with early-stage dementia can be interpreted in part as a response to their situation and a way of coping with the threats that it is perceived to present, and not just an impaired view of time. Priorities for future research are highlighted in the discussion.
Abstract.
Sabatini S, Ukoumunne O, Ballard C, Diehl M, Wahl H-W, Brothers A, Clare L (2020). Health Differences Among People with Varying Profiles of Awareness of Positive and Negative Age-Related Changes. Innovation in Aging, 4(Suppl 1), 480-480.
Sabatini S, Ukoumunne O, Ballard C, Anstey K, Diehl M, Brothers A, Wahl H-W, Clare L (2020). Higher Awareness of Positive and Negative Age-Related Changes Relate to Lower Objective Cognitive Scores. Innovation in Aging, 4(Suppl 1), 597-598.
Sabatini S, Ukoumunne O, Ballard C, Collins R, Anstey KJ, Diehl M, Brothers A, Corbett A, Hampshire A, Brooker H, et al (2020). Higher perceived age‐related gains and losses relate to lower objective cognitive scores. Alzheimer's & Dementia, 16(S6).
Talbot CV, O'Dwyer ST, Clare L, Heaton J, Anderson J (2020). How people with dementia use twitter: a qualitative analysis.
Computers in Human Behavior,
102, 112-119.
Abstract:
How people with dementia use twitter: a qualitative analysis
People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.
Abstract.
Talbot C, O'Dwyer S, Clare L, Heaton J, Anderson J (2020). Identifying people with dementia on Twitter.
Dementia (London),
19(4), 965-974.
Author URL.
Choi A, Ballard C, Martyr A, Collins R, Morris RG, Clare L (2020). Impact of psychosis on quality of life and well‐being in dementia. Alzheimer's & Dementia, 16(S6).
Sabatini S, Ukoumunne O, Ballard C, Brothers A, Kaspar R, Collins R, Kim S, Corbett A, Aarsland D, Hampshire A, et al (2020). International relevance of Two Measures of Awareness of Age-Related Change (AARC). BMC Geriatrics, 20
McMaster M, Kim S, Clare L, Torres SJ, Cherbuin N, DʼEste C, Anstey KJ (2020). Lifestyle Risk Factors and Cognitive Outcomes from the Multidomain Dementia Risk Reduction Randomized Controlled Trial, Body Brain Life for Cognitive Decline (BBL-CD).
Journal of the American Geriatrics Society,
68(11), 2629-2637.
Abstract:
Lifestyle Risk Factors and Cognitive Outcomes from the Multidomain Dementia Risk Reduction Randomized Controlled Trial, Body Brain Life for Cognitive Decline (BBL-CD)
BACKGROUND/OBJECTIVES: to evaluate the efficacy of a multidomain intervention to reduce lifestyle risk factors for Alzheimer's disease (AD) and improve cognition in individuals with subjective cognitive decline (SCD) or mild cognitive impairment (MCI). DESIGN: the study was an 8-week two-arm single-blind proof-of-concept randomized controlled trial. SETTING: Community-dwelling individuals living in Canberra, Australia, and surrounding areas. PARTICIPANTS: Participants were 119 individuals (intervention n = 57; control n = 62) experiencing SCD or MCI. INTERVENTION: the control condition involved four educational modules covering dementia and lifestyle risk factors, Mediterranean diet, physical activity, and cognitive engagement. Participants were instructed to implement this information into their own lifestyle. The intervention condition included the same educational modules and additional active components to assist with the implementation of this information into participants’ lifestyles: dietitian sessions, an exercise physiologist session, and online brain training. MEASUREMENTS: Lifestyle risk factors for AD were assessed using the Australian National University-Alzheimer's Disease Risk Index (ANU-ADRI), and cognition was assessed using Alzheimer's Disease Assessment Scale-Cognitive subscale, Pfeffer Functional Activities Questionnaire, Symbol Digit Modalities Test (SDMT), Trail Making Test-B, and Category Fluency. RESULTS: the primary analysis showed that the intervention group had a significantly lower ANU-ADRI score (χ2 = 10.84; df = 3; P =.013) and a significantly higher cognition score (χ2 = 7.28; df = 2; P =.026) than the control group. A secondary analysis demonstrated that the changes in lifestyle were driven by increases in protective lifestyle factors (χ2 = 12.02; df = 3; P =.007), rather than a reduction in risk factors (χ2 = 2.93; df = 3; P =.403), and cognitive changes were only apparent for the SDMT (χ2 = 6.46; df = 2; P =.040). Results were robust to intention-to-treat analysis controlling for missing data. CONCLUSION: Results support the hypothesis that improvements in lifestyle risk factors for dementia can lead to improvements in cognition over a short time frame with a population experiencing cognitive decline. Outcomes from this trial support the conduct of a larger and longer trial with this participant group.
Abstract.
Clare L, Martyr A, Henderson C, Gamble L, Matthews FE, Quinn C, Nelis SM, Rusted J, Thom J, Knapp M, et al (2020). Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort.
J Alzheimers Dis,
78(3), 1207-1216.
Abstract:
Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort.
BACKGROUND: a significant proportion of people with dementia live alone, but little is known about their specific needs. OBJECTIVE: to understand the profile of people living alone with mild-to-moderate dementia in the UK and identify any systematic differences associated with living situation. METHODS: We analyzed cross-sectional data from 1,541 people with mild-to-moderate dementia and 1,277 caregivers participating in the IDEAL cohort at the first wave of assessment. RESULTS: There were 1,256 (81.5%) people with dementia living with others and 285 (18.5%) living alone, of whom 51 (3% of whole sample) reported little or no informal support. There were relatively few differences associated with living situation and odds ratios were generally small. People living alone were older on average, and more likely to be female, than those living with others. Those living alone were more likely to have higher cognitive ability and self-reported functional ability, and more social contact with those from other households. They were also lonelier, expressed less satisfaction with life, and used home care services and equipment more. There were no differences in symptoms, mood, quality of life, or well-being. CONCLUSION: the findings support the view that it is possible to 'live well' with mild-to-moderate dementia while living alone, given appropriate support, including home care and equipment. Nevertheless, it is important to consider how those living alone may be supported to have a more satisfactory experience, and how health and social care services can best respond to their needs.
Abstract.
Author URL.
Rippon I, Victor CR, Quinn C, Martyr A, Matthews FE, Clare L (2020). Loneliness and isolation among people with dementia and their carers: Prevalence, risk factors and a dyadic analysis. Alzheimer's & Dementia, 16(S7).
Delgado J, Bowman K, Clare L (2020). Potentially inappropriate prescribing in dementia: a state-of-the-art review since 2007.
BMJ Open,
10(1).
Abstract:
Potentially inappropriate prescribing in dementia: a state-of-the-art review since 2007.
OBJECTIVES: Dementia frequently occurs alongside comorbidities. Coexisting conditions are often managed with multiple medications, leading to increased risk of potentially inappropriate medication and adverse drug reactions. We aimed to estimate prevalence of, and identify factors reported to be associated with, potentially inappropriate prescribing (PIP) for older individuals diagnosed with dementia. DESIGN: We used a state-of-the-art review approach, selecting papers written in English and published from 2007 to January 2018. Publications were retrieved from Scopus and Web of Science databases. Inclusion criteria included a formal diagnosis of dementia, a formal classification of PIP and reported prevalence of PIP as an outcome. Random effects models were used to provide a pooled estimate of prevalence of PIP. The Appraisal tool for Cross-Sectional Studies (AXIS tool) was used to assess bias in the included studies. RESULTS: the bibliographic search yielded 221 citations, with 12 studies meeting the inclusion criteria. The estimates of PIP prevalence for people living with dementia ranged from 14% to 64%. Prevalence was 31% (95% CI 9 to 52) in the community, and 42% (95% CI 30 to 55) in nursing/care homes. PIP included prescribing likely related to dementia (eg, hypnotics and sedative and cholinesterase inhibitors) and prescribing related to treatment of comorbidities (eg, cardiovascular drugs and non-steroidal anti-inflammatory medication). Higher levels of comorbidity were associated with increased risk of PIP; however, only one study investigated associations with specific comorbidities of dementia. CONCLUSION: PIP remains a significant issue in healthcare management for people living with dementia. Higher levels of comorbidity are associated with increased prevalence of PIP, but the specific conditions driving this increase remain unknown. Further work is necessary to investigate PIP related to the presence of common comorbidities in patients living with dementia.
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Author URL.
Victor CR, Rippon I, Nelis SM, Martyr A, Litherland R, Pickett J, Hart N, Henley J, Matthews F, Clare L, et al (2020). Prevalence and determinants of loneliness in people living with dementia: Findings from the <scp>IDEAL</scp> programme.
International Journal of Geriatric Psychiatry,
35(8), 851-858.
Abstract:
Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme
ObjectiveTo establish the prevalence and determinants of loneliness among people living with dementia.MethodsUsing data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined the prevalence and predictors of loneliness in 1547 people with mild‐to‐moderate dementia. Loneliness was assessed using the six‐item De Jong Gierveld loneliness scale.ResultsAbout 30.1% of people with dementia reported feeling moderately lonely and 5.2% severely lonely. Depressive symptoms and increased risk of social isolation were associated with both moderate and severe loneliness. Those living alone were more likely to experience severe loneliness as were those reporting poorer quality of life. Marital status was not associated with loneliness nor were dementia diagnosis or cognitive function.ConclusionsThis is one of the few large‐scale studies to explore the prevalence of and determinants of loneliness among people living with dementia. Social isolation, depression and living alone were associated with experiencing loneliness. Longitudinal studies are needed to determine the directionality of these associations.
Abstract.
Lamont RA, Nelis SM, Quinn C, Martyr A, Rippon I, Kopelman MD, Hindle JV, Jones RW, Litherland R, Clare L, et al (2020). Psychological predictors of 'living well' with dementia: findings from the IDEAL study.
Aging Ment Health,
24(6), 956-964.
Abstract:
Psychological predictors of 'living well' with dementia: findings from the IDEAL study.
Objectives: Increasingly, research has explored how psychological resources enable adaptation to illness. However, it is unclear whether psychological resources protect against the potential negative effects on living well with a progressive and life-limiting condition such as dementia. This paper examines the association between psychological resources and the ability to 'live well' with dementia.Method: Data from 1547 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort were used. Multivariate linear regression was employed to examine the association between self-reported measures of psychological resources (self-efficacy, optimism and self-esteem) and indices of capability to 'live well' (quality of life, well-being and life satisfaction).Results: all three measures of psychological resources had positive and independent associations with indices of living well and the effect sizes were similar. Effect sizes reduced when accounting for shared variance between psychological resources, showing some overlap in these constructs.Conclusion: Self-efficacy, optimism and self-esteem were each associated with capability to 'live well'. Overlap between these three resources is evident and when combined they may provide greater resilience when dealing with the challenges of living with dementia. Interventions for people with dementia could seek to improve levels of these potentially-modifiable psychological resources.
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Author URL.
Ismail Z, Black SE, Camicioli R, Chertkow H, Herrmann N, Laforce R, Montero-Odasso M, Rockwood K, Rosa-Neto P, Seitz D, et al (2020). Recommendations of the 5th Canadian Consensus Conference on the diagnosis and treatment of dementia.
Alzheimer's and Dementia,
16(8), 1182-1195.
Abstract:
Recommendations of the 5th Canadian Consensus Conference on the diagnosis and treatment of dementia
Since 1989, four Canadian Consensus Conferences on the Diagnosis and Treatment of Dementia (CCCDTD) have provided evidence-based dementia guidelines for Canadian clinicians and researchers. We present the results of the 5th CCCDTD, which convened in October 2019, to address topics chosen by the steering committee to reflect advances in the field, and build on previous guidelines. Topics included: (1) utility of the National Institute on Aging research framework for clinical Alzheimer's disease (AD) diagnosis; (2) updating diagnostic criteria for vascular cognitive impairment, and its management; (3) dementia case finding and detection; (4) neuroimaging and fluid biomarkers in diagnosis; (5) use of non-cognitive markers of dementia for better dementia detection; (6) risk reduction/prevention; (7) psychosocial and non-pharmacological interventions; and (8) deprescription of medications used to treat dementia. We hope the guidelines are useful for clinicians, researchers, policy makers, and the lay public, to inform a current and evidence-based approach to dementia.
Abstract.
Testad I, Clare L, Anstey K, Selbæk G, Bjørkløf GH, Henderson C, Dalen I, Gjestsen MT, Rhodes S, Røsvik J, et al (2020). Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers (SHAPE): study protocol for a multi-centre randomised controlled trial.
BMC Public Health,
20(1).
Abstract:
Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers (SHAPE): study protocol for a multi-centre randomised controlled trial.
BACKGROUND: with an increasing number of people with dementia worldwide and limited advancement in medical treatments, the call for new and cost-effective approaches is crucial. The utility of self-management has been proven in certain chronic conditions. However, very little work has been undertaken regarding self-management in people with dementia. METHODS: the SHAPE trial will include 372 people with mild to moderate dementia to evaluate the effectiveness and cost-effectiveness of an educational programme combining approaches of self-management, health promotion, and e-learning for care partners. The study is a multi-site, single-randomised, controlled, single-blinded trial with parallel arms. The intervention arm is compared with treatment as usual. The intervention comprises a 10-week course delivered as group sessions for the participants with dementia. The sessions are designed to develop self-management skills and to provide information on the nature of the condition and the development of healthy behaviours in a supportive learning environment. An e-learning course will be provided for care partners which covers similar and complementary material to that discussed in the group sessions for the participant with dementia. DISCUSSION: This trial will explore the effect of the SHAPE group intervention on people with mild to moderate dementia in terms of self-efficacy and improvement in key health and mental health outcomes and cost-effectiveness, along with carer stress and knowledge of dementia. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04286139, registered prospectively February 26, 2020, https://clinicaltrials.gov/ct2/show/NCT04286139.
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Gwernan-Jones R, Abbott R, Lourida I, Rogers M, Green C, Ball S, Hemsley A, Cheeseman D, Clare L, Moore DA, et al (2020). The experiences of hospital staff who provide care for people living with dementia: a systematic review and synthesis of qualitative studies.
INTERNATIONAL JOURNAL OF OLDER PEOPLE NURSING,
15(4).
Author URL.
Rippon I, Quinn C, Martyr A, Morris R, Nelis SM, Jones IR, Victor CR, Clare L (2020). The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study.
Aging Ment Health,
24(9), 1411-1420.
Abstract:
The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study.
Objectives: the quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers.Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor-Partner Interdependence Model (APIM) framework.Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad.Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member's life satisfaction and well-being, while the partner's perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.
Abstract.
Author URL.
Victor CR, Rippon I, Quinn C, Nelis SM, Martyr A, Hart N, Lamont R, Clare L (2020). The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme. Aging & Mental Health, 25(7), 1232-1238.
Gwernan-Jones R, Lourida I, Abbott RA, Rogers M, Green C, Ball S, Hemsley A, Cheeseman D, Clare L, Moore D, et al (2020). Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews.
Health Services and Delivery Research,
8(43), 1-248.
Abstract:
Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews
. Background
. Being in hospital can be particularly confusing and challenging not only for people living with dementia, but also for their carers and the staff who care for them. Improving the experience of care for people living with dementia in hospital has been recognised as a priority.
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. Objectives
. To understand the experience of care in hospital for people living with dementia, their carers and the staff who care for them and to assess what we know about improving the experience of care.
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. Review methods
. We undertook three systematic reviews: (1) the experience of care in hospital, (2) the experience of interventions to improve care in hospital and (3) the effectiveness and cost-effectiveness of interventions to improve the experience of care. Reviews 1 and 2 sought primary qualitative studies and were analysed using meta-ethnography. Review 3 sought comparative studies and economic evaluations of interventions to improve experience of care. An interweaving approach to overarching synthesis was used to integrate the findings across the reviews.
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. Data sources
. Sixteen electronic databases were searched. Forwards and backwards citation chasing, author contact and grey literature searches were undertaken. Screening of title and abstracts and full texts was performed by two reviewers independently. A quality appraisal of all included studies was undertaken.
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. Results
. Sixty-three studies (reported in 82 papers) were included in review 1, 14 studies (reported in 16 papers) were included in review 2, and 25 studies (reported in 26 papers) were included in review 3. A synthesis of review 1 studies found that when staff were delivering more person-centred care, people living with dementia, carers and staff all experienced this as better care. The line of argument, which represents the conceptual findings as a whole, was that ‘a change of hospital culture is needed before person-centred care can become routine’. From reviews 2 and 3, there was some evidence of improvements in experience of care from activities, staff training, added capacity and inclusion of carers. In consultation with internal and external stakeholders, the findings from the three reviews and overarching synthesis were developed into 12 DEMENTIA CARE pointers for service change: key institutional and environmental practices and processes that could help improve experience of care for people living with dementia in hospital.
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. Limitations
. Few of the studies explored experience from the perspectives of people living with dementia. The measurement of experience of care across the studies was not consistent. Methodological variability and the small number of intervention studies limited the ability to draw conclusions on effectiveness.
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. Conclusions
. The evidence suggests that, to improve the experience of care in hospital for people living with dementia, a transformation of organisational and ward cultures is needed that supports person-centred care and values the status of dementia care. Changes need to cut across hierarchies and training systems to facilitate working patterns and interactions that enable both physical and emotional care of people living with dementia in hospital. Future research needs to identify how such changes can be implemented, and how they can be maintained in the long term. To do this, well-designed controlled studies with improved reporting of methods and intervention details to elevate the quality of available evidence and facilitate comparisons across different interventions are required.
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. Study registration
. This study is registered as PROSPERO CRD42018086013.
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. Funding
. This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 43. See the NIHR Journals Library website for further project information. Additional funding was provided by the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.
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Abstract.
Thompson‐Coon J, Abbott RA, Lourida I, Gwernan‐Jones R, Rogers M, Cheeseman D, Moore D, Green C, Ball S, Clare L, et al (2020). Understanding and improving the experience of care for people with dementia in hospital: Developing the dementia care pointers for service change. Alzheimer's & Dementia, 16(S7).
Opdebeeck C, Katsaris MA, Martyr A, Lamont RA, Pickett JA, Rippon I, Thom JM, Victor C, Clare L (2020). What Are the Benefits of Pet Ownership and Care Among People with Mild-to-Moderate Dementia? Findings from the IDEAL programme.
Journal of Applied Gerontology,
40(11), 1559-1567.
Abstract:
What Are the Benefits of Pet Ownership and Care Among People with Mild-to-Moderate Dementia? Findings from the IDEAL programme
Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.
Abstract.
Hillman A, Jones IR, Quinn C, Nelis SM, Lamont RA, Clare L (2020). ‘All the world’s a stage’: Accounting for the dementia experience – insights from the IDEAL study.
Qualitative Research,
20(5), 703-720.
Abstract:
‘All the world’s a stage’: Accounting for the dementia experience – insights from the IDEAL study
Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices.
Abstract.
Clare L, Wu Y-T, Quinn C, Jones IR, Victor CR, Nelis SM, Martyr A, Litherland R, Pickett JA, Hindle JV, et al (2019). A Comprehensive Model of Factors Associated with Capability to "Live Well" for Family Caregivers of People Living with Mild-to-Moderate Dementia: Findings from the IDEAL Study.
Alzheimer Dis Assoc Disord,
33(1), 29-35.
Abstract:
A Comprehensive Model of Factors Associated with Capability to "Live Well" for Family Caregivers of People Living with Mild-to-Moderate Dementia: Findings from the IDEAL Study.
INTRODUCTION: Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues. METHODS: We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being. We used structural equation modelling to derive latent variables for 7 domains reflecting caregivers' perceptions of their personal resources and experiences, and to examine the associations with caregivers' perceptions of their capability to "live well." RESULTS: the domain of psychological characteristics and psychological health was most strongly related to living well [2.53; 95% confidence interval (CI), 2.08-2.97], followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00) and relationship with the person with dementia (-0.22; 95% CI, -0.41 to -0.03) had smaller, significant associations. Social location (0.28; 95% CI, -0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, -0.15 to 0.28) were not significantly associated with living well. DISCUSSION: These findings demonstrate the importance of supporting caregivers' psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling them to maintain vital social capitals, assets and resources.
Abstract.
Author URL.
Quinn C, Jones IR, Martyr A, Nelis SM, Morris RG, Clare L (2019). Caregivers' beliefs about dementia: findings from the IDEAL study.
Psychol Health,
34(10), 1214-1230.
Abstract:
Caregivers' beliefs about dementia: findings from the IDEAL study.
Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person's condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers' DRs in order to provide more tailored information and support.
Abstract.
Author URL.
Kudlicka A, Martyr A, Bahar-Fuchs A, Woods B, Clare L (2019). Cognitive rehabilitation for people with mild to moderate dementia.
Cochrane Database of Systematic Reviews,
2019(8).
Abstract:
Cognitive rehabilitation for people with mild to moderate dementia
This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: to evaluate the effects of cognitive rehabilitation on everyday functioning and other outcomes for people with mild to moderate dementia, and on outcomes for caregivers to identify and explore factors that may be associated with the efficacy of cognitive rehabilitation.
Abstract.
Clare L, Teale JC, Toms G, Kudlicka A, Evans I, Abrahams S, Goldstein LH, Hindle JV, Ho AK, Jahanshahi M, et al (2019). Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: a scoping review.
NeuroRehabilitation,
43(4), 443-471.
Abstract:
Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: a scoping review
Background: Despite its potentially significant impact, cognitive disability may be overlooked in a number of progressive neurodegenerative conditions, as other difficulties dominate the clinical picture. Objective: We examined the extent, nature and range of the research evidence relating to cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in Parkinsonian disorders, multiple sclerosis (MS), frontotemporal dementias (FTD), motor neuron disease and Huntington's disease. Methods: Scoping review based on searches of MEDLINE and CINAHL up to 15 March 2016. Results: We included 140 eligible papers. Over half of the studies, and almost all the randomised controlled trials, related to MS, while a number of single case studies described interventions for people with FTD. CR interventions addressed functional ability, communication and interaction, behaviour or memory. The majority of psychotherapy interventions involved cognitive behavioural therapy for depression or anxiety. Self-management interventions were mainly available for people with MS. There were few reports of interventions specific to caregivers. Numerous methodological challenges were identified. Conclusions: the limited range of studies for all conditions except MS suggests a need firstly to synthesise systematically the available evidence across conditions and secondly to develop well-designed studies to provide evidence about the effectiveness of CR and other psychological interventions.
Abstract.
Bahar-Fuchs A, Martyr A, Goh AM, Sabates J, Clare L (2019). Cognitive training for people with mild to moderate dementia.
Cochrane Database Syst Rev,
3(3).
Abstract:
Cognitive training for people with mild to moderate dementia.
BACKGROUND: Cognitive impairment, a defining feature of dementia, plays an important role in the compromised functional independence that characterises the condition. Cognitive training (CT) is an approach that uses guided practice on structured tasks with the direct aim of improving or maintaining cognitive abilities. OBJECTIVES: • to assess effects of CT on cognitive and non-cognitive outcomes for people with mild to moderate dementia and their caregivers.• to compare effects of CT with those of other non-pharmacological interventions, including cognitive stimulation or rehabilitation, for people with mild to moderate dementia and their caregivers.• to identify and explore factors related to intervention and trial design that may be associated with the efficacy of CT for people with mild to moderate dementia and their caregivers. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group Specialised Register, on 5 July 2018. ALOIS contains records of clinical trials identified through monthly searches of several major healthcare databases and numerous trial registries and grey literature sources. In addition to this, we searched MEDLINE, Embase, PsycINFO, CINAHL, LILACS, Web of Science Core Collection, ClinicalTrials.gov, and the World Health Organization's trials portal, ICTRP, to ensure that searches were comprehensive and up-to-date. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that described interventions for people with mild to moderate dementia and compared CT versus a control or alternative intervention. DATA COLLECTION AND ANALYSIS: We extracted relevant data from published manuscripts and through contact with trial authors if required. We assessed risk of bias using the Cochrane 'Risk of bias' tool. We divided comparison conditions into active or passive control conditions and alternative treatments. We used a large number of measures and data to evaluate 19 outcomes at end of treatment, as well as 16 outcomes at follow-up in the medium term; we pooled this information in meta-analyses. We calculated pooled estimates of treatment effect using a random-effects model, and we estimated statistical heterogeneity using a standard Chi² statistic. We graded the evidence using GradePro. MAIN RESULTS: the 33 included trials were published between 1988 and 2018 and were conducted in 12 countries; most were unregistered, parallel-group, single-site RCTs, with samples ranging from 12 to 653 participants. Interventions were between two and 104 weeks long. We classified most experimental interventions as 'straight CT', but we classified some as 'augmented CT', and about two-thirds as multi-domain interventions. Researchers investigated 18 passive and 13 active control conditions, along with 15 alternative treatment conditions, including occupational therapy, mindfulness, reminiscence therapy, and others.The methodological quality of studies varied, but we rated nearly all studies as having high or unclear risk of selection bias due to lack of allocation concealment, and high or unclear risk of performance bias due to lack of blinding of participants and personnel.We used data from 32 studies in the meta-analysis of at least one outcome. Relative to a control condition, we found moderate-quality evidence showing a small to moderate effect of CT on our first primary outcome, composite measure of global cognition at end of treatment (standardised mean difference (SMD) 0.42, 95% confidence interval (CI) 0.23 to 0.62), and high-quality evidence showing a moderate effect on the secondary outcome of verbal semantic fluency (SMD 0.52, 95% CI 0.23 to 0.81) at end of treatment, with these gains retained in the medium term (3 to 12 months post treatment). In relation to many other outcomes, including our second primary outcome of clinical disease severity in the medium term, the quality of evidence was very low, so we were unable to determine whether CT was associated with any meaningful gains.When compared with an alternative treatment, we found that CT may have little to no effect on our first primary outcome of global cognition at end of treatment (SMD 0.21, 95% CI -0.23 to 0.64), but the quality of evidence was low. No evidence was available to assess our second primary outcome of clinical disease severity in the medium term. We found moderate-quality evidence showing that CT was associated with improved mood of the caregiver at end of treatment, but this was based on a single trial. The quality of evidence in relation to many other outcomes at end of treatment and in the medium term was too low for us to determine whether CT was associated with any gains, but we are moderately confident that CT did not lead to any gains in mood, behavioural and psychological symptoms, or capacity to perform activities of daily living. AUTHORS' CONCLUSIONS: Relative to a control intervention, but not to a variety of alternative treatments, CT is probably associated with small to moderate positive effects on global cognition and verbal semantic fluency at end of treatment, and these benefits appear to be maintained in the medium term. Our certainty in relation to many of these findings is low or very low. Future studies should take stronger measures to mitigate well-established risks of bias, and should provide long-term follow-up to improve our understanding of the extent to which observed gains are retained. Future trials should also focus on direct comparison of CT versus alternative treatments rather than passive or active control conditions.
Abstract.
Author URL.
Collins R, Silarova B, Clare L (2019). Dementia Primary Prevention Policies and Strategies and Their Local Implementation: a Scoping Review Using England as a Case Study.
J Alzheimers Dis,
70(s1), S303-S318.
Abstract:
Dementia Primary Prevention Policies and Strategies and Their Local Implementation: a Scoping Review Using England as a Case Study.
BACKGROUND: Understanding the policy context and how policy is implemented at the local and clinical level is an important precursor to developing preventive strategies focusing on dementia risk reduction in primary healthcare settings. OBJECTIVE: Using England as a case study, we review policies and strategies relevant to dementia prevention from the national to local level and how these are translated into primary healthcare services. METHODS: We conducted a scoping review covering: 1) identification of national, regional, and local policies and strategies that include dementia prevention; 2) identification of national guidelines for implementing dementia prevention at the clinical level; and 3) evaluation of the implementation of these at the clinical level. RESULTS: Dementia prevention is addressed in national policy, and this filters through to regional and local levels. Focus on dementia prevention is limited and variable. Reference to modifiable risk factors is associated with other non-communicable diseases, placing less emphasis on factors more dementia specific. Evidence of implementation of dementia prevention policies at the clinical level is limited and inconsistent. Available evidence suggests messages about dementia prevention may best be delivered through primary healthcare services such as the National Health Service (NHS) Health Check. CONCLUSION: the limitations identified in this review could be addressed through development of a national policy focused specifically on dementia prevention. This could provide a platform for increasing knowledge and understanding among the general population and healthcare professionals. It would be important for such a policy to cover the full range of modifiable risk factors relevant to dementia.
Abstract.
Author URL.
Oyebode JR, Pini S, Ingleson E, Megson M, Horton M, Clare L, Al-Janabi H, Brayne C, Wright P (2019). Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.
Patient,
12(1), 125-136.
Abstract:
Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia
Background and Objectives: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. Methods: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review. Results: an initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents. Conclusions: the resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
Abstract.
Jones K, Birchley G, Huxtable R, Clare L, Walter T, Dixon J (2019). End of Life Care: a Scoping Review of Experiences of Advance Care Planning for People with Dementia.
Dementia (London),
18(3), 825-845.
Abstract:
End of Life Care: a Scoping Review of Experiences of Advance Care Planning for People with Dementia.
Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care. We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member). Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.
Abstract.
Author URL.
Clare L, Kudlicka A, Oyebode JR, Jones RW, Bayer A, Leroi I, Kopelman M, James IA, Culverwell A, Pool J, et al (2019). Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: the GREAT RCT.
Health Technol Assess,
23(10), 1-242.
Abstract:
Goal-oriented cognitive rehabilitation for early-stage Alzheimer's and related dementias: the GREAT RCT.
BACKGROUND: Cognitive rehabilitation (CR) is an individualised, person-centred intervention for people with mild to moderate dementia that addresses the impact of cognitive impairment on everyday functioning. OBJECTIVES: to determine whether or not CR is a clinically effective and cost-effective intervention for people with mild to moderate Alzheimer's disease or vascular or mixed dementia, and their carers. DESIGN: This multicentre randomised controlled trial compared CR with treatment as usual (TAU). Following a baseline assessment and goal-setting to identify areas of everyday functioning that could be improved or better managed, participants were randomised (1 : 1) via secure web access to an independent randomisation centre to receive either TAU or CR and followed up at 3 and 9 months post randomisation. SETTING: Community. PARTICIPANTS: Participants had an International Classification of Diseases, Tenth Edition, diagnosis of Alzheimer's disease or vascular or mixed dementia, had mild to moderate cognitive impairment (Mini Mental State Examination score of ≥ 18 points), were stable on medication if prescribed, and had a family carer who was willing to contribute. The exclusion criteria were people with a history of brain injury or other neurological disorder and an inability to speak English. To achieve adequate power, we needed 350 people to complete the trial, with 175 people in each trial arm. INTERVENTION: Cognitive rehabilitation consisted of 10 therapy sessions over 3 months, followed by four maintenance sessions over 6 months, delivered in participants' homes. The therapists were nine occupational therapists and one nurse. OUTCOME MEASURES: the primary outcome was self-reported goal attainment at 3 months. Goal attainment was also assessed at 9 months. Carers provided independent ratings of goal attainment at both time points. The secondary outcomes were participant quality of life, mood, self-efficacy and cognition, and carer stress, health status and quality of life. The assessments at 3 and 9 months were conducted by researchers who were blind to the participants' group allocation. RESULTS: a total of 475 participants were randomised (CR arm, n = 239; TAU arm, n = 236), 427 participants (90%) completed the trial and 426 participants were analysed (CR arm, n = 208, TAU arm, n = 218). At 3 months, there were statistically significant large positive effects for participant-rated goal attainment [mean change in the CR arm: 2.57; mean change in the TAU arm: 0.86; Cohen'sd = 0.97, 95% confidence interval (CI) 0.75 to 1.19], corroborated by carer ratings (Cohen'sd = 1.11, 95% CI 0.89 to 1.34). These effects were maintained at 9 months for both the participant ratings (Cohen's d = 0.94, 95% CI 0.71 to 1.17) and the carer ratings (Cohen's d = 0.96, 95% CI 0.73 to 1.20). There were no significant differences in the secondary outcomes. In the cost-utility analyses, there was no evidence of cost-effectiveness in terms of gains in the quality-adjusted life-years (QALYs) of the person with dementia (measured using the DEMentia Quality of Life questionnaire utility score) or the QALYs of the carer (measured using the EuroQol-5 Dimensions, three-level version) from either cost perspective. In the cost-effectiveness analyses, by reference to the primary outcome of participant-rated goal attainment, CR was cost-effective from both the health and social care perspective and the societal perspective at willingness-to-pay values of £2500 and above for improvement in the goal attainment measure. There was no evidence on the cost-effectiveness of the self-efficacy measure (the Generalized Self-Efficacy Scale) from either cost perspective. LIMITATIONS: Possible limitations arose from the non-feasibility of using observational outcome measures, the lack of a general measure of functional ability and the exclusion of people without a carer or with rarer forms of dementia. CONCLUSIONS: Cognitive rehabilitation is clinically effective in enabling people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy sessions. FUTURE WORK: Next steps will focus on the implementation of CR into NHS and social care services and on extending the approach to people with rarer forms of dementia. TRIAL REGISTRATION: Current Controlled Trials ISRCTN21027481. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 10. See the NIHR Journals Library website for further project information.
Abstract.
Author URL.
Victor C, Rippon I, Martyr A, Mathews F, Clare L (2019). HOW LONELY AND ISOLATED ARE OLDER PEOPLE WITH DEMENTIA AND THEIR CARERS: a DYADIC ANALYSIS.
Innovation in Aging,
3(Supplement_1), S39-S40.
Abstract:
HOW LONELY AND ISOLATED ARE OLDER PEOPLE WITH DEMENTIA AND THEIR CARERS: a DYADIC ANALYSIS
Abstract
. Studies of loneliness and isolation have rarely explored is how these experiences are reported within couples or the wider households. The IDEAL study has collected details of loneliness, as measured by the de Jong Gierveld (DJG) scale (range 0-6) and a single-item self-report measure, and isolation, using the six-item Lubben social network scale (range 0-30) from both people with dementia and carers. Loneliness is classified into three groups: not lonely (score 0-2), moderately lonely (3-4) and severely lonely (5+) and isolation into two: not isolated (score of 13+) or isolated (12 or less). of the 1547 people with dementia and 1283 carers interviewed at baseline we have 1089 dyads who provided complete data on loneliness and 1204 for social isolation. Loneliness ratings are congruent between 43.1% of dyads and for 67.8% for isolation highlighting the subjective evaluative nature of loneliness as compared with more objectively measured isolation.
Abstract.
Victor C, Rippon I, Martyr A, Mathews F, Clare L (2019). HOW LONELY AND ISOLATED ARE OLDER PEOPLE WITH DEMENTIA AND THEIR CARERS: a DYADIC ANALYSIS.
Innovation in aging,
3(Suppl 1), S39-S40.
Abstract:
HOW LONELY AND ISOLATED ARE OLDER PEOPLE WITH DEMENTIA AND THEIR CARERS: a DYADIC ANALYSIS
Abstract Studies of loneliness and isolation have rarely explored is how these experiences are reported within couples or the wider households. The IDEAL study has collected details of loneliness, as measured by the de Jong Gierveld (DJG) scale (range 0-6) and a single-item self-report measure, and isolation, using the six-item Lubben social network scale (range 0-30) from both people with dementia and carers. Loneliness is classified into three groups: not lonely (score 0-2), moderately lonely (3-4) and severely lonely (5+) and isolation into two: not isolated (score of 13+) or isolated (12 or less). of the 1547 people with dementia and 1283 carers interviewed at baseline we have 1089 dyads who provided complete data on loneliness and 1204 for social isolation. Loneliness ratings are congruent between 43.1% of dyads and for 67.8% for isolation highlighting the subjective evaluative nature of loneliness as compared with more objectively measured isolation.
Abstract.
Clare L, Kudlicka A, Oyebode JR, Jones RW, Bayer A, Leroi I, Kopelman M, James IA, Culverwell A, Pool J, et al (2019). Individual goal-oriented cognitive rehabilitation to improve everyday functioning for people with early-stage dementia: a multicentre randomised controlled trial (the GREAT trial).
International Journal of Geriatric Psychiatry,
34(5), 709-721.
Abstract:
Individual goal-oriented cognitive rehabilitation to improve everyday functioning for people with early-stage dementia: a multicentre randomised controlled trial (the GREAT trial)
Objectives: to determine whether individual goal-oriented cognitive rehabilitation (CR) improves everyday functioning for people with mild-to-moderate dementia. Design and methods: Parallel group multicentre single-blind randomised controlled trial (RCT) comparing CR added to usual treatment (CR) with usual treatment alone (TAU) for people with an ICD-10 diagnosis of Alzheimer, vascular or mixed dementia, and mild-to-moderate cognitive impairment (Mini-Mental State Examination [MMSE] score ≥ 18), and with a family member willing to contribute. Participants allocated to CR received 10 weekly sessions over 3 months and four maintenance sessions over 6 months. Participants were followed up 3 and 9 months post randomisation by blinded researchers. The primary outcome was self-reported goal attainment at 3 months. Secondary outcomes at 3 and 9 months included informant-reported goal attainment, quality of life, mood, self-efficacy, and cognition and study partner stress and quality of life. Results: We randomised (1:1) 475 people with dementia; 445 (CR = 281) were included in the intention to treat analysis at 3 months and 426 (CR = 208) at 9 months. At 3 months, there were statistically significant large positive effects for participant-rated goal attainment (d = 0.97; 95% CI, 0.75-1.19), corroborated by informant ratings (d = 1.11; 95% CI, 0.89-1.34). These effects were maintained at 9 months for both participant (d = 0.94; 95% CI, 0.71-1.17) and informant (d = 0.96; 95% CI, 0.73-1.2) ratings. The observed gains related to goals directly targeted in the therapy. There were no significant differences in secondary outcomes. Conclusions: CR enables people with early-stage dementia to improve their everyday functioning in relation to individual goals targeted in the therapy.
Abstract.
Quinn C, Nelis SM, Martyr A, Victor C, Morris RG, Clare L, IDEAL study team (2019). Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction with Life: Findings from the IDEAL Study.
Am J Geriatr Psychiatry,
27(8), 838-848.
Abstract:
Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction with Life: Findings from the IDEAL Study.
OBJECTIVE: the aim of this study was to identify the potential impact of positive and negative dimensions of caregiving on caregiver well-being and satisfaction with life (SwL). METHODS: This study used time-point one data from the Improving the experience of Dementia and Enhancing Active Life (also known as IDEAL)cohort study that involved 1,283 informal caregivers of people in the mild-to-moderate stages of dementia recruited from 29 sites within Great Britain. Multivariate linear regression modeling was used to investigate the associations between positive dimensions of caregiving (measured by caregiving competence and perceptions of positive aspects of caregiving), negative dimensions of caregiving (measured by caregiving stress and role captivity), and caregiver well-being and SwL. RESULTS: Lower well-being was associated with low caregiving competence (-13.77; 95% confidence interval [CI]:-16.67, -10.87), perceiving fewer positive aspects of caregiving (-7.67; 95% CI:-10.26, -5.07), high caregiving stress (-24.45; 95% CI:-26.94, -21.96), and high role captivity (-15.61; 95% CI:-18.33, -12.89). Lower SwL was associated with low caregiving competence (-4.61; 95% CI:-5.57, -3.66), perceiving fewer positive aspects of caregiving (-3.09; 95% CI:-3.94, -2.25), high caregiving stress (-7.88; 95% CI:-8.71, -7.06), and high role captivity (-6.41; 95% CI:-7.27, -5.54). When these four measures were combined within the same model, only positive aspects of caregiving and caregiving stress retained independent associations with well-being and SwL. CONCLUSION: Both positive and negative dimensions of caregiving were associated with caregiver well-being and SwL. Psychological therapies and interventions need to consider not only the negative aspects of caregiving but also positive caregiving experiences and their implications for caregiver well-being and SwL.
Abstract.
Author URL.
Clare L, Clare L, Martyr A, Quinn C, Victor C, Matthews F (2019). LIVING ALONE WITH DEMENTIA: FINDINGS FROM THE IDEAL COHORT.
Innovation in Aging,
3(Supplement_1), S40-S40.
Abstract:
LIVING ALONE WITH DEMENTIA: FINDINGS FROM THE IDEAL COHORT
Abstract
. We aimed to better understand the profile of people living alone with mild-to-moderate dementia in the UK and to identify any systematic differences between those living alone and those living with others. We analysed cross-sectional data from 1541 people with mild-to-moderate dementia participating in the IDEAL cohort at the first wave of assessment. There were 285 participants (18.5%) living alone and 1256 (81.5%) living with others, usually a spouse/partner. Among those living alone, 145 (50.9%) had no care partner participating in the study, and 56 (19%) had received no help from a relative or friend in the past week. People living alone were older on average than those living with others, reported fewer functional difficulties, had slightly smaller social networks, engaged in fewer cultural activities, and experienced slightly more loneliness. People living alone had lower satisfaction with life scores, but quality of life scores did not differ between the groups.
Abstract.
Evans IEM, Llewellyn DJ, Matthews FE, Woods RT, Brayne C, Clare L, CFAS-Wales research team (2019). Living alone and cognitive function in later life.
Arch Gerontol Geriatr,
81, 222-233.
Abstract:
Living alone and cognitive function in later life.
BACKGROUND: Living alone may be associated with greater risk for social isolation and loneliness. Living alone, social isolation, loneliness, and limited engagement in social activity have all been associated with poorer cognitive function in later life. Hence, if individuals who live alone are also at greater risk of isolation and loneliness, this may exacerbate poor cognitive function. OBJECTIVE: to determine whether people living alone are more at risk of social isolation, feelings of loneliness, and limited social activity, and to examine the associations between living alone and cognitive function in later life. METHOD: Baseline (N = 2197) and two-year follow-up (N = 1498) data from community-dwelling participants, age ≥65 years, without cognitive impairment or depression at baseline from CFAS-Wales were used. Linear regression analyses were conducted to assess the association between living arrangement and cognitive function at baseline and two-year follow-up. RESULTS: People living alone were more isolated from family and experienced more emotional loneliness than those living with others, but were not more isolated from friends, did not experience more social loneliness, and were more likely to engage in regular social activity. Living alone was not associated with poorer cognitive function at baseline or two-year follow-up. DISCUSSION: These findings have positive implications and suggest that people who live alone in later life are not at greater risk of poor cognitive function at baseline or two-year follow-up. Social isolation may be more associated with poor cognitive function.
Abstract.
Author URL.
Sabatini S, Silarova B, Martyr A, Collins R, Ballard C, Anstey KJ, Kim S, Clare L (2019). META-ANALYSIS OF AARC AND EMOTIONAL AND PHYSICAL WELL-BEING.
Innovation in Aging,
3(Supplement_1), S384-S385.
Abstract:
META-ANALYSIS OF AARC AND EMOTIONAL AND PHYSICAL WELL-BEING
Abstract
. Associations of awareness of age-related change (AARC) with emotional and physical well-being and cognitive functioning were synthesised in a systematic review with a correlational random-effects meta-analysis. Twelve studies were included in the review, nine exploring the association between AARC and emotional well-being and eleven exploring the association between AARC and physical well-being. No study explored the association between AARC and cognition. There is evidence of weak associations between higher level of AARC gains and better emotional well-being and between higher level of AARC losses and both poorer emotional well-being and poorer physical well-being. There was no association between AARC gains and physical well-being. There is some indication that AARC gains and losses can play a role in emotional well-being and that AARC losses are associated with physical well-being but these associations are weak. Due to the limited number of studies and their high heterogeneity, interpretation of these results remains unclear.
Abstract.
Sabatini S, Silarova B, Martyr A, Collins R, Ballard C, Anstey KJ, Kim S, Clare L (2019). META-ANALYSIS OF AARC AND EMOTIONAL AND PHYSICAL WELL-BEING.
Innovation in aging,
3(Suppl 1), S384-S385.
Abstract:
META-ANALYSIS OF AARC AND EMOTIONAL AND PHYSICAL WELL-BEING
Abstract Associations of awareness of age-related change (AARC) with emotional and physical well-being and cognitive functioning were synthesised in a systematic review with a correlational random-effects meta-analysis. Twelve studies were included in the review, nine exploring the association between AARC and emotional well-being and eleven exploring the association between AARC and physical well-being. No study explored the association between AARC and cognition. There is evidence of weak associations between higher level of AARC gains and better emotional well-being and between higher level of AARC losses and both poorer emotional well-being and poorer physical well-being. There was no association between AARC gains and physical well-being. There is some indication that AARC gains and losses can play a role in emotional well-being and that AARC losses are associated with physical well-being but these associations are weak. Due to the limited number of studies and their high heterogeneity, interpretation of these results remains unclear.
Abstract.
Horton MC, Oyebode J, Clare L, Megson M, Shearsmith L, Brayne C, Kind P, Hoare Z, Al Janabi H, Hewison V, et al (2019). Measuring Quality of Life in Carers of People with Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR).
The Gerontologist,
61(3), e1-e11.
Abstract:
Measuring Quality of Life in Carers of People with Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)
Abstract
.
. Background and Objectives
. A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers’ needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends).
.
.
. Methods
. Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken.
.
.
. Results
. Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥. 70; test–retest ≥. 85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100).
.
.
. Discussion and Implications
. SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.
.
Abstract.
Alexander C, Martyr A, Savage S, Clare L (2019). Measuring awareness in people with dementia: protocol for a scoping review. BMC Systematic Reviews
Lourida I, Gwernan-Jones R, Abbott RA, Rogers M, Green C, Ball S, Richards D, Hemsley A, Clare L, Llewellyn DJ, et al (2019). P3‐522: IMPROVING THE EXPERIENCE OF CARE FOR PEOPLE WITH DEMENTIA IN HOSPITAL: SYNTHESIS OF QUALITATIVE AND QUANTITATIVE EVIDENCE. Alzheimer's & Dementia, 15(7S_Part_22), p1170-p1170.
Rippon I, Quinn C, Martyr A, Victor C, Mathews F, Clare L (2019). PREVALENCE OF LONELINESS AND ISOLATION AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS.
Innovation in aging,
3(Suppl 1), S40-S40.
Abstract:
PREVALENCE OF LONELINESS AND ISOLATION AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS
Abstract People with dementia and carers may be vulnerable to loneliness and isolation. The IDEAL study includes two loneliness measures: 6 item de Jong Gierveld (DJG) scale (range 0-6) and a single-item self-report measure and the six-item Lubben social network scale (range 0-30). Full data are available for 1533 people with dementia for self-rated loneliness and for 1455 for the DJG scale and 1232 and 1195 carers respectively. For isolation complete data are available for 1489 people with dementia and 1252 carers. The prevalence of severe loneliness for people with dementia were 10% (self-rated) and 5% (DJG score 5+), approximately the population norm, and 15% and 18% respectively for carers. Most people with dementia or carers did not rate themselves as lonely ((79% and 71%) compared with 65% and 39% using the DJG scale. One third, 35%, of people with dementia were at risk of isolation compared with 18% of carers.
Abstract.
Rippon I, Quinn C, Martyr A, Victor C, Mathews F, Clare L (2019). PREVALENCE OF LONELINESS AND ISOLATION AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS.
Innovation in Aging,
3(Supplement_1), S40-S40.
Abstract:
PREVALENCE OF LONELINESS AND ISOLATION AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS
Abstract
. People with dementia and carers may be vulnerable to loneliness and isolation. The IDEAL study includes two loneliness measures: 6 item de Jong Gierveld (DJG) scale (range 0-6) and a single-item self-report measure and the six-item Lubben social network scale (range 0-30). Full data are available for 1533 people with dementia for self-rated loneliness and for 1455 for the DJG scale and 1232 and 1195 carers respectively. For isolation complete data are available for 1489 people with dementia and 1252 carers. The prevalence of severe loneliness for people with dementia were 10% (self-rated) and 5% (DJG score 5+), approximately the population norm, and 15% and 18% respectively for carers. Most people with dementia or carers did not rate themselves as lonely ((79% and 71%) compared with 65% and 39% using the DJG scale. One third, 35%, of people with dementia were at risk of isolation compared with 18% of carers.
Abstract.
Lamont RA, Quinn C, Nelis SM, Martyr A, Rusted JM, Hindle JV, Longdon B, Clare L (2019). Self-esteem, self-efficacy and optimism as psychological resources among family caregivers of people with dementia: Findings from the IDEAL study.
International Psychogeriatrics,
31Abstract:
Self-esteem, self-efficacy and optimism as psychological resources among family caregivers of people with dementia: Findings from the IDEAL study
Objectives:
Being a family caregiver, and in particular giving care to someone with dementia, impacts mental and physical health and potentially reduces the ability of caregivers to “live well.” This paper examines whether three key psychological resources—self-efficacy, optimism, and self-esteem—are associated with better outcomes for caregivers of people with dementia.
Design and Participants:
Caregivers of 1,283 people with mild-to-moderate dementia in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of self-efficacy, optimism, and self-esteem, and “living well” (quality of life, life satisfaction, and well-being). Multivariate linear regression was used to examine the association between psychological resources and “living well”.
Results:
Self-efficacy, optimism, and self-esteem were all independently associated with better capability to “live well” for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day).
Conclusions:
Low self-efficacy, optimism, and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.
Abstract.
Evans IEM, Martyr A, Collins R, Brayne C, Clare L (2019). Social Isolation and Cognitive Function in Later Life: a Systematic Review and Meta-Analysis.
J Alzheimers Dis,
70(s1), S119-S144.
Abstract:
Social Isolation and Cognitive Function in Later Life: a Systematic Review and Meta-Analysis.
BACKGROUND: There is some evidence to suggest that social isolation may be associated with poor cognitive function in later life. However, findings are inconsistent and there is wide variation in the measures used to assess social isolation. OBJECTIVE: We conducted a systematic review and meta-analysis to investigate the association between social isolation and cognitive function in later life. METHODS: a search for longitudinal studies assessing the relationship between aspects of social isolation (including social activity and social networks) and cognitive function (including global measures of cognition, memory, and executive function) was conducted in PsycInfo, CINAHL, PubMed, and AgeLine. A random effects meta-analysis was conducted to assess the overall association between measures of social isolation and cognitive function. Sub-analyses investigated the association between different aspects of social isolation and each of the measures of cognitive function. RESULTS: Sixty-five articles were identified by the systematic review and 51 articles were included in the meta-analysis. Low levels of social isolation characterized by high engagement in social activity and large social networks were associated with better late-life cognitive function (r = 0.054, 95% CI: 0.043, 0.065). Sub-analyses suggested that the association between social isolation and measures of global cognitive function, memory, and executive function were similar and there was no difference according to gender or number of years follow-up. CONCLUSIONS: Aspects of social isolation are associated with cognitive function in later life. There is wide variation in approaches to measuring social activity and social networks across studies which may contribute to inconsistencies in reported findings.
Abstract.
Author URL.
Evans IEM, Llewellyn DJ, Matthews FE, Woods RT, Brayne C, Clare L (2019). Social isolation, cognitive reserve, and cognition in older people with depression and anxiety.
Aging and Mental Health,
23(12), 1691-1700.
Abstract:
Social isolation, cognitive reserve, and cognition in older people with depression and anxiety
Objectives: Poor social connections may be associated with poor cognition in older people who are not experiencing mental health problems, and the trajectory of this association may be moderated by cognitive reserve. However, it is unclear whether this relationship is the same for older people with symptoms of depression and anxiety. This paper aims to explore social relationships and cognitive function in older people with depression and anxiety. Method: Baseline and two-year follow-up data were analysed from the Cognitive Function and Ageing Study–Wales (CFAS-Wales). We compared levels of social isolation, loneliness, social contact, cognitive function, and cognitive reserve at baseline amongst older people with and without depression or anxiety. Linear regression was used to assess the relationship between isolation and cognition at baseline and two-year follow-up in a subgroup of older people meeting pre-defined criteria for depression or anxiety. A moderation analysis tested for the moderating effect of cognitive reserve. Results: Older people with depression or anxiety perceived themselves as more isolated and lonely than those without depression or anxiety, despite having an equivalent level of social contact with friends and family. In people with depression or anxiety, social isolation was associated with poor cognitive function at baseline, but not with cognitive change at two-year follow-up. Cognitive reserve did not moderate this association. Conclusion: Social isolation was associated with poor cognitive function at baseline, but not two-year follow-up. This may be attributed to a reduction in mood-related symptoms at follow-up, linked to improved cognitive function.
Abstract.
Nelis SM, Wu Y-T, Matthews FE, Martyr A, Quinn C, Rippon I, Rusted J, Thom JM, Kopelman MD, Hindle JV, et al (2019). The impact of co-morbidity on the quality of life of people with dementia: findings from the IDEAL study.
Age Ageing,
48(3), 361-367.
Abstract:
The impact of co-morbidity on the quality of life of people with dementia: findings from the IDEAL study.
BACKGROUND: the aim was to investigate the co-morbidity profile of people with dementia and examine the associations between severity of co-morbidity, health-related quality of life (HRQoL) and quality of life (QoL). METHODS: the improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort consisted of 1,547 people diagnosed with dementia who provided information on the number and type of co-morbid conditions. Participants also provided ratings of their health-related and dementia-specific QoL. RESULTS: the majority of the sample were living with more than one chronic condition. Hypertension was commonly reported and frequently combined with connective tissue disease, diabetes and depression. The number of co-morbid conditions was associated with low QoL scores, and those with severe co-morbidity (≥5 conditions) showed the greatest impact on their well-being. CONCLUSIONS: Co-morbidity is an important risk factor for poor QoL and health status in people with dementia. Greater recognition of the nature and impact of co-morbidity is needed to inform support and interventions for people with dementia and a multidisciplinary approach to care provision is recommended.
Abstract.
Author URL.
Martyr A, Nelis SM, Quinn C, Rusted JM, Morris RG, Clare L, IDEAL programme team (2019). The relationship between perceived functional difficulties and the ability to live well with mild-to-moderate dementia: Findings from the IDEAL programme.
Int J Geriatr Psychiatry,
34(8), 1251-1261.
Abstract:
The relationship between perceived functional difficulties and the ability to live well with mild-to-moderate dementia: Findings from the IDEAL programme.
OBJECTIVES: the objectives of the study are to investigate how different levels of functional ability relate to quality of life, well-being, and satisfaction with life, conceptualised as reflecting capability to "live well" in people with dementia. METHODS/DESIGN: Participants were 1496 people with mild-to-moderate dementia and 1188 informants who completed baseline assessments in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study. Total self-rated and informant-rated scores on the Functional Activities Questionnaire were split into six ability levels to monitor how poorer functioning impacts the ability to live well. We also investigated the potential influence of sociodemographic and diagnostic variables, depression, cognition, and carer stress. RESULTS: Multivariate multiple regression models found that people with dementia who had the greatest functional impairment according to self-ratings and informant ratings had poorer living well scores than those with the least functional impairment. Sociodemographic and diagnostic factors and cognition had little impact on effect sizes. For self-ratings, depression attenuated the relationship between functional ability and living well, whereas carer stress attenuated informant ratings. CONCLUSIONS: People with dementia with the least functional impairments had greater capability to live well than those with the most functional impairment. Even subtle perceived difficulties in functional ability had a detrimental effect on the ability of people with dementia to live well. Depression in people with dementia and carer stress in informants influenced these associations, and therefore, these factors should be routinely included in future research studies and clinical assessments.
Abstract.
Author URL.
Henderson C, Knapp M, Nelis SM, Quinn C, Martyr A, Wu YT, Jones IR, Victor CR, Pickett JA, Hindle JV, et al (2019). Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study.
Alzheimer's and Dementia: Translational Research and Clinical Interventions,
5, 685-696.
Abstract:
Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study
Introduction: We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain. Methods: We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups. Results: Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three-quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). Discussion: Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.
Abstract.
Clare L, Wu Y-T, Jones IR, Victor CR, Nelis S, Martyr A, Quinn C, Litherland R, Pickett JA, Hindle JV, et al (2018). A comprehensive model of factors associated with subjective perceptions of "living well" with dementia: findings from the IDEAL study. Alzheimer Disease and Associated Disorders
Vatter S, McDonald KR, Stanmore E, Clare L, McCormick SA, Leroi I (2018). A qualitative study of female caregiving spouses' experiences of intimate relationships as cognition declines in Parkinson's disease.
AGE AND AGEING,
47(4), 604-610.
Author URL.
Pickett J, Bird C, Ballard C, Banerjee S, Brayne C, Cowan K, Clare L, Comas-Herrera A, Corner L, Daley S, et al (2018). A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.
International Journal of Geriatric Psychiatry,
33(7), 900-906.
Abstract:
A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025
Objective: National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. Methods: Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research. Results: the taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda. Conclusions: By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.
Abstract.
Martyr A, Clare L (2018). Awareness of functional ability in people with early-stage dementia.
Int J Geriatr Psychiatry,
33(1), 31-38.
Abstract:
Awareness of functional ability in people with early-stage dementia.
OBJECTIVES: Assessment of functional ability in people with early-stage dementia (PwD) is an important area of study because it forms part of the diagnostic process and may help in monitoring disease progression. Most researchers and clinicians rely on informant ratings rather than observing actual functional performance or employing self-ratings. There has however been little research to verify whether informant ratings of functioning are accurate, and there has been even less research investigating the accuracy of self-ratings of functional ability in PwD. No study has used the performance-monitoring metacognitive approach to investigate awareness of functional ability. METHODS: Thirty-seven people with early-stage dementia completed an objective functional assessment and provided self-ratings before and after completing each section of the objective test. Informants provided ratings of functioning and burden. Scores were converted to percentages to allow for direct comparison. RESULTS: Objectively assessed functional ability significantly correlated with self-ratings and informant ratings. Self-ratings did not correlate with informant ratings. For converted scores, self-ratings were more similar than informant ratings to the objectively assessed mean scores. Burden was unrelated to functional assessments after correcting for multiple comparisons. CONCLUSIONS: Self-rated functional ability was more accurate than informant ratings when compared with objectively assessed ability, with informants tending to significantly underestimate the functional ability of PwD. The findings call into question the likelihood that informants will provide accurate ratings of functional ability and suggests that self-ratings may offer a more accurate estimate of functional ability. Self-ratings made by PwD should be more widely employed in clinical and research settings. Copyright © 2017 John Wiley & Sons, Ltd.
Abstract.
Author URL.
Quinn C, Morris RG, Clare L (2018). Beliefs About Dementia: Development and Validation of the Representations and Adjustment to Dementia Index (RADIX).
American Journal of Geriatric Psychiatry,
26(6), 680-689.
Abstract:
Beliefs About Dementia: Development and Validation of the Representations and Adjustment to Dementia Index (RADIX)
Objectives: the Self-Regulation Model (SRM) identifies that the beliefs people hold about an illness can influence their responses to that illness. Although there are generic measures of illness representations, there is a need for a brief tailored measure to use with people with dementia. The aim of this study was to develop and validate a brief measure called the Representations and Adjustment to Dementia Index (RADIX). The RADIX contains questions on the SRM elements: Identity, Cause, Timeline, Control, and Consequences. Methods: the RADIX validation was conducted with a sample of 385 community-dwelling people with mild to moderate dementia who were taking part in the IDEAL cohort study. Test–retest reliability was conducted over a 4-week period with a separate sample of 20 people with dementia. Results: the validation process resulted in a reduction in the number of items in the Timeline, Control, and Consequences items. The resulting RADIX demonstrated good acceptability, internal reliability, and test–retest reliability. All the RADIX items had low missing data, indicating good acceptability. The factor analysis confirmed that the Consequences items formed two subscales (practical and emotional consequences) that had Cronbach's α of 8 and 0.91 respectively. Test–retest reliability indicated that the Identity, Timeline, and Control items had moderate reliability and the practical and emotional consequences scales had good reliability. Conclusions: the RADIX demonstrates acceptable psychometric properties, proves to be a useful measure for exploring people's beliefs about dementia, and could aid the provision of tailored information and support to people with dementia.
Abstract.
McMaster M, Kim S, Clare L, Torres SJ, D este C, Anstey KJ (2018). Body, brain, life for cognitive decline (BBL-CD): Protocol for a multidomain dementia risk reduction randomized controlled trial for subjective cognitive decline and mild cognitive impairment.
Clinical Interventions in Aging,
13, 2397-2406.
Abstract:
Body, brain, life for cognitive decline (BBL-CD): Protocol for a multidomain dementia risk reduction randomized controlled trial for subjective cognitive decline and mild cognitive impairment
© 2018 McMaster et al. Background: with no cure for dementia and the number of people living with the condition predicted to rapidly rise, there is an urgent need for dementia risk reduction and prevention interventions. Modifiable lifestyle risk factors have been identified as playing a major role in the development of dementia; hence, interventions addressing these risk factors represent a significant opportunity to reduce the number of people developing dementia. Relatively few interventions have been trialed in older participants with cognitive decline (secondary prevention). Objectives: This study evaluates the efficacy and feasibility of a multidomain lifestyle risk reduction intervention for people with subjective cognitive decline (SCD) and mild cognitive impairment (MCI). Methods: This study is an 8-week, two-arm, single-blind, randomized controlled trial (RCT) of a lifestyle modification program to reduce dementia risk. The active control group receives the following four online educational modules: dementia literacy and lifestyle risk, Mediterranean diet (MeDi), cognitive engagement and physical activity. The intervention group also completes the same educational modules but receives additional practical components including sessions with a dietitian, online brain training and sessions with an exercise physiologist to assist with lifestyle modification. Results: Primary outcome measures are cognition (The Alzheimer’s Disease Assessment Scale-Cognitive-Plus [ADAS-Cog-Plus]) and a composite lifestyle risk factor score for Alzheimer’s disease (Australian National University – Alzheimer’s Disease Risk Index [ANU-ADRI]). Secondary outcome measures are motivation to change lifestyle (Motivation to Change Lifestyle and Health Behaviour for Dementia Risk Reduction [MCLHB-DRR]) and health-related quality of life (36-item Short Form Health Survey [SF-36]). Feasibility will be determined through adherence to diet (Mediterranean Diet Adherence Screener [MEDAS] and Australian Recommended Food Score [ARFS]), cognitive engagement (BrainHQ-derived statistics) and physical activity interventions (physical activity calendars). Outcomes are measured at baseline, immediately post-intervention and at 3-and 6-month follow-up by researchers blind to group allocation. Discussion: If successful and feasible, secondary prevention lifestyle interventions could provide a targeted, cost-effective way to reduce the number of people with cognitive decline going on to develop Alzheimer’s disease (AD) and other dementias.
Abstract.
Opdebeeck C, Matthews FE, Wu YT, Woods RT, Brayne C, Clare L (2018). Cognitive reserve as a moderator of the negative association between mood and cognition: Evidence from a population-representative cohort.
Psychological Medicine,
48(1), 61-71.
Abstract:
Cognitive reserve as a moderator of the negative association between mood and cognition: Evidence from a population-representative cohort
Background Cognitive reserve (CR) has been associated with better cognitive function and lower risk of depression in older people, yet it remains unclear whether CR moderates the association between mood and cognition. This study aimed to investigate whether a comprehensive indicator of CR, including education, occupation and engagement in cognitive and social activities, acts as a moderator of this association. Methods This was a cross-sectional study utilising baseline data from the Cognitive Function and Ageing Study II (CFAS II), a large population-based cohort of people aged 65+ in England. Complete data on the measures of CR, mood and cognition were available for 6565 dementia-free individuals. Linear regression models were used to investigate the potential modifying effect of CR on the association between cognition and mood with adjustment for age, sex and missing data. Results Levels of CR did moderate the negative association between mood and cognition; the difference in cognition between those with and without a clinical level mood disorder was significantly smaller in the middle (-2.28; 95% confidence interval (CI) -3.65 to -0.90) and higher (-1.30; 95% CI -2.46 to -0.15) CR groups compared with the lower CR group (-4.01; 95% CI -5.53 to -2.49). The individual components of CR did not significantly moderate the negative association between mood and cognition. Conclusion These results demonstrate that CR, indexed by a composite score based on multiple indicators, can moderate the negative association between lowered mood and cognition, emphasising the importance of continuing to build CR across the lifespan in order to maintain cognitive health.
Abstract.
Bahar-Fuchs A, Martyr A, Goh AMY, Sabates J, Clare L (2018). Cognitive training for people with mild to moderate dementia.
Cochrane Database of Systematic Reviews,
2018(7).
Abstract:
Cognitive training for people with mild to moderate dementia
This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: to evaluate the effects of cognitive training on cognitive and non-cognitive outcomes for people with mild to moderate dementia and their caregivers. To compare the effects of cognitive training with those of other non-pharmacological interventions, including cognitive stimulation or rehabilitation. To identify and explore factors related to intervention and trial design that may be associated with the efficacy of cognitive training.
Abstract.
Wu YT, Clare L, Hindle JV, Nelis SM, Martyr A, Matthews FE (2018). Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study.
BMC medicine,
16(1).
Abstract:
Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
BACKGROUND: the heterogeneity of symptoms across dementia subtypes has important implications for clinical practice and dementia research. Variation in subtypes and associated symptoms may influence the capability to live well for people with dementia and carers. The aim of this study is to investigate the potential impact of dementia subtypes on the capability to live well for both people with dementia and their carers. METHODS: the analysis was based on the 1283 dyads of community-dwelling people with dementia and carers in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, a large cohort study in Great Britain. Capability to live well was defined using three measures: quality of life, life satisfaction and wellbeing. Structural equation modelling was used to investigate capability to live well in seven dementia subtypes: Alzheimer's disease (AD), Vascular dementia (VaD), mixed AD/VaD, frontotemporal dementia (FTD), Parkinson's disease dementia (PDD), Lewy body dementia (LBD) and unspecified/other, accounting for dyadic data structure and adjusting for age and sex, type of relationship between person with dementia and their carer and the number of chronic conditions. RESULTS: the major subtypes in this study population were AD (56%), VaD (11%) and mixed AD/VaD (21%). Compared to participants with AD, people with non-AD subtypes generally reported a lower capability to live well. Carers for people with PDD (- 1.71; 95% confidence interval (CI) - 3.24, - 0.18) and LBD (- 2.29; 95% CI - 3.84, - 0.75) also reported a lower capability to live well than carers for people with AD. After adjusting for demographic factors and comorbidity, PDD (- 4.28; 95% CI - 5.65, - 2.91) and LBD (- 3.76; 95% CI - 5.14, - 2.39) continued to have the strongest impact on both people with dementia and their carers. CONCLUSIONS: This study suggests a variation in capability to live well across dementia subtypes. It is important for care providers to consider different needs across subtypes. Health professionals who provide post-diagnostic support may need to pay more attention to the complex needs of people living with PDD and LBD and their carers.
Abstract.
Oltra-Cucarella J, Ferrer-Cascales R, Clare L, Morris SB, Espert R, Tirapu J, Sánchez-SanSegundo M (2018). Differential effects of cognition-focused interventions for people with Alzheimer's disease: a meta-analysis.
Neuropsychology,
32(6), 664-679.
Abstract:
Differential effects of cognition-focused interventions for people with Alzheimer's disease: a meta-analysis
Objective: the efficacy of cognition-focused interventions (CFIs) for the treatment of Alzheimer's disease (AD) has been questioned recently. To date, the specific effects of cognitive rehabilitation (CR), cognitive training (CT), and cognitive stimulation [CS] have not been analyzed due to inconsistencies in the use of the comparison groups. This work aims to analyze the differential effects of CFIs by removing the influence of the comparison group from the estimates of the effects. Method: a literature search performed in Pubmed, Proquest, and Embase databases yielded 65 potential studies, of which 33 studies with a sample size of 1,225 individuals were meta-analyzed. Each intervention group was treated as the unit of analysis to remove the confounding effects of the comparison condition. Measures of general cognitive functioning, memory and functional outcomes were compared using the hierarchical robust variance estimator metaregression. Age, education, sex, risk of bias, sample size, duration of intervention, the proportion of drop-outs, pharmacological treatment, and severity of disease were included as covariates. Results: Only CT differed from no cognition-focused interventions (NCFI) for memory outcomes in univariate analyses, but differences became nonsignificant when covariates were included in the model. CR showed a significantly higher effect in outcomes measuring functioning in targeted domains with no differences in standard cognitive tests relative to NCFI. Conclusions: This work supports previous findings questioning the efficacy of CT or CS for AD. Moving toward CFIs focused on relevant goals and including measures related to the skills, abilities or activities that are the focus of the intervention is encouraged.
Abstract.
Hillman A, Jones IR, Quinn C, Nelis SM, Clare L (2018). Dualities of dementia illness narratives and their role in a narrative economy.
Sociology of Health and IllnessAbstract:
Dualities of dementia illness narratives and their role in a narrative economy
The concept of ‘narrative economies’ has recently been proposed as a set of exchange relationships that, through biography and story‐telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre‐existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia – like our participants – being called upon to account for their experience, as a means of developing a politicised ‘collective illness identity’. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.
Abstract.
Bahar-Fuchs A, Martyr A, Goh A, Clare L (2018). F5‐02‐03: COGNITIVE TRAINING FOR OLDER ADULTS WITH DEMENTIA: AN UPDATED COCHRANE REVIEW. Alzheimer's & Dementia, 14(7S_Part_31), p1627-p1627.
Pike KE, Ong B, Clare L, Kinsella GJ (2018). Face-name memory training in subjective memory decline: how does office-based training translate to everyday situations?.
Neuropsychol Dev Cogn B Aging Neuropsychol Cogn,
25(5), 724-752.
Abstract:
Face-name memory training in subjective memory decline: how does office-based training translate to everyday situations?
This study aimed to examine whether people with subjective memory decline (SMD) benefit from face-name memory training (single session) as much as older adult controls in an office-based setting. Approximately 2 months later, groups were reassessed for translation to a naturalistic setting. In the office setting, there was a significant interaction between stimulus type (cued name; uncued name) and training condition (spaced retrieval, semantic association, no training), but no group differences nor interactions. Semantic association was only beneficial for cued names, whereas spaced retrieval was beneficial in cued and uncued conditions. In the naturalistic setting, however, there were no training effects. Naturalistic performance was predicted by demographics, cognition, and motivation. All groups reported improved memory control beliefs and contentment. Our study demonstrates the benefit of simple memory strategies for older adults, including those with SMD, in office-based settings. Translation to everyday settings is complex and may require prior intervention to increase motivation.
Abstract.
Author URL.
Hindle JV, Watermeyer TJ, Roberts J, Brand A, Hoare Z, Martyr A, Clare L (2018). Goal-orientated cognitive rehabilitation for dementias associated with Parkinson's disease―A pilot randomised controlled trial.
International Journal of Geriatric PsychiatryAbstract:
Goal-orientated cognitive rehabilitation for dementias associated with Parkinson's disease―A pilot randomised controlled trial
Objective
To examine the appropriateness and feasibility of cognitive rehabilitation for people with dementias associated with Parkinson's in a pilot randomised controlled study.
Methods
This was a single-blind pilot randomised controlled trial of goal-oriented cognitive rehabilitation for dementias associated with Parkinson's. After goal setting, participants were randomised to cognitive rehabilitation (n = 10), relaxation therapy (n = 10), or treatment-as-usual (n = 9). Primary outcomes were ratings of goal attainment and satisfaction with goal attainment. Secondary outcomes included quality of life, mood, cognition, health status, everyday functioning, and carers' ratings of goal attainment and their own quality of life and stress levels. Assessments were at 2 and 6 months following randomisation.
Results
At 2 months, cognitive rehabilitation was superior to treatment-as-usual and relaxation therapy for the primary outcomes of self-rated goal attainment (d = 1.63 and d = 1.82, respectively) and self-rated satisfaction with goal attainment (d = 2.04 and d = 1.84). At 6 months, cognitive rehabilitation remained superior to treatment-as-usual (d = 1.36) and relaxation therapy (d = 1.77) for self-rated goal attainment.
Cognitive rehabilitation was superior to treatment as usual and/or relaxation therapy in a number of secondary outcomes at 2 months (mood, self-efficacy, social domain of quality of life, carers' ratings of participants' goal attainment) and at 6 months (delayed recall, health status, quality of life, carer ratings of participants' goal attainment). Carers receiving cognitive rehabilitation reported better quality of life, health status, and lower stress than those allocated to treatment-as-usual.
Conclusions
Cognitive rehabilitation is feasible and potentially effective for dementias associated with Parkinson's disease.
Abstract.
Author URL.
Nelis SM, Thom JM, Jones IR, Hindle JV, Clare L (2018). Goal-setting to Promote a Healthier Lifestyle in Later Life: Qualitative Evaluation of the AgeWell Trial.
Clin Gerontol,
41(4), 335-345.
Abstract:
Goal-setting to Promote a Healthier Lifestyle in Later Life: Qualitative Evaluation of the AgeWell Trial.
OBJECTIVE: We report a mixed method evaluation of the feasibility and implementation of the AgeWell goal-setting intervention to promote healthy ageing later life. METHOD: Researcher field notes, goal-setting interview content, and semi-structured interviews with participants were content analysed to review trial implementation and participants' perspective on the goal-setting and mentoring intervention. RESULTS: 75 people were recruited: 21 in the goal-setting and 22 in the goal-setting with mentoring arms of the intervention. Goal-setting was feasible in the main domains of interest. Adherence to the protocol was good and the mentoring schedule was adhered to. Participants reported satisfaction with their goal attainment, but barriers for non-achievement were also identified. Recommendations for small changes to the intervention included reducing the number of goals. CONCLUSIONS: Participants understood the goal-setting process, and were able to set realistic and achievable lifestyle goals. The intervention and the procedures were acceptable but changes in how goal-setting is both introduced and monitored are needed for wider implementation. CLINICAL IMPLICATIONS: Goal-setting can be a useful process to help people alter their lifestyle to allow them to age more successfully and reduce risk factors associated with dementia.
Abstract.
Author URL.
Hinchliffe S, Jackson M, Wyatt K, Barlow A, Barreto M, Clare L, Deplege M, Durie R, Fleming L, Groom N, et al (2018). Healthy publics: Enabling cultures and environments for health. Palgrave Communications, 4, n/a-n/a.
Wu Y-T, Clare L, Jones IR, Martyr A, Nelis SM, Quinn C, Victor CR, Lamont RA, Rippon I, Matthews FE, et al (2018). Inequalities in living well with dementia-The impact of deprivation on well-being, quality of life and life satisfaction: Results from the improving the experience of dementia and enhancing active life study.
Int J Geriatr Psychiatry,
33(12), 1736-1742.
Abstract:
Inequalities in living well with dementia-The impact of deprivation on well-being, quality of life and life satisfaction: Results from the improving the experience of dementia and enhancing active life study.
OBJECTIVES: Area level factors, such as deprivation and urban/rural settings, have been associated with variation in local resources and services and health inequality in later life. The aim of this study is to investigate the potential impact of deprivation and urban/rural areas on capability to live well with dementia and to examine whether availability of informal carers modified the associations. METHODS: the analysis was based on a large cohort study of 1547 community-dwelling people with dementia across Great Britain. Quality of life, life satisfaction, and well-being were measured as indices of "living well." Multivariate modelling was used to investigate differences in living well measures across deprivation quintiles and urban/rural areas adjusting for sociodemographic factors and number of comorbidities and stratifying by three groups: those living with a carer, those with a noncoresident carer and those without a carer. RESULTS: Negative dose-response relationships between deprivation and measures of quality of life (-2.12; 95% CI: -3.52, -0.73), life satisfaction (-1.27; 95% CI: -2.70, 0.16), and well-being (-5.24; 95% CI: -10.11, -0.36) were found in participants living with a carer. The associations were less clear in those with a noncoresident carer and those without a carer but these two groups generally reported lower scores on living well indicators than participants living with a carer. There was no urban/rural difference. CONCLUSIONS: the findings suggest inequalities in living well with dementia according to levels of deprivation. Additional resources are needed to improve postdiagnostic care in highly deprived areas and support those who have no informal carer.
Abstract.
Author URL.
Martyr A, Nelis S, Quinn C, Wu YT, Lamont R, Henderson C, Clarke R, Hindle J, Thom J, Jones IR, et al (2018). Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia.
Psychological Medicine,
48, 2130-2139.
Abstract:
Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being, and life satisfaction in people with dementia
Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases to January 7th 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ≥75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37,639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1-0.29) or negligible (
Abstract.
Vatter S, McDonald KR, Stanmore E, Clare L, Leroi I (2018). Multidimensional Care Burden in Parkinson-Related Dementia.
Journal of Geriatric Psychiatry and Neurology,
31(6), 319-328.
Abstract:
Multidimensional Care Burden in Parkinson-Related Dementia
Background and Objective: Providing care to people with Parkinson-related dementia (PwPRD) may result in significant stress, strain, and burden for life partners. A common measurement of life partner burden is the Zarit Burden Interview (ZBI), which considers “burden” as a unitary concept; however, burden is highly complex and most likely comprises several dimensions. This study aimed to explore the factor structure of the ZBI in life partners of PwPRD and to examine the relationships among the emerging factors and the demographic and clinical features. Methods: Life partners of PwPRD participated in home-based quantitative assessments and self-completed postal questionnaires. The assessment battery included ZBI, measures of relationship satisfaction, mood, stress, resilience, health, quality of life, feelings related to care provision, and sociodemographic questions. Data on PwPRDs’ motor and neuropsychiatric symptom severity were also elicited in home-based assessments. Results: an exploratory factor analysis (principal axis factoring) of ZBI, conducted with 127 life partners, revealed five burden dimensions: social and psychological constraints, personal strain, interference with personal life, concerns about future, and guilt. These burden factors were associated with lower relationship satisfaction, mental health, and resilience, and higher stress, anxiety, depression, resentment, negative strain, and PwPRD motor severity. In multiple linear regression analyses, where each factor score was the dependent variable, stress, negative strain, and resentment emerged as significant predictors of specific burden dimensions. Conclusions: Burden is a complex and multidimensional construct. Interventions should address specific types of burden among life partners of PwPRD to support couples’ relationships and maintain quality of life.
Abstract.
Clare L, Wu Y-T, Jones IR, Victor CR, Nelis SM, Martyr A, Quinn C, Litherland R, Pickett J, Hindle JV, et al (2018). O4‐08‐04: a COMPREHENSIVE MODEL OF FACTORS ASSOCIATED WITH SUBJECTIVE PERCEPTIONS OF LIVING WELL WITH DEMENTIA: FINDINGS FROM THE IDEAL STUDY. Alzheimer's & Dementia, 14(7S_Part_27), p1422-p1423.
Silarova B, Nelis SM, Ashworth RM, Ballard C, Bieńkiewicz M, Henderson C, Hillman A, Hindle JV, Hughes JC, Lamont RA, et al (2018). Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.
BMC Public Health,
18(1).
Abstract:
Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.
BACKGROUND: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. METHODS: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or
Abstract.
Author URL.
Litherland R, Burton J, Cheeseman M, Campbell D, Hawkins M, Hawkins T, Oliver K, Scott D, Ward J, Nelis SM, et al (2018). Reflections on PPI from the 'Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study.
Dementia (London),
17(8), 1035-1044.
Abstract:
Reflections on PPI from the 'Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study.
This article describes the work of the 'Action on Living Well: Asking You' group - an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people's perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the 'Action on Living Well: Asking You' group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/.
Abstract.
Author URL.
Evans IEM, Llewellyn DJ, Matthews FE, Woods RT, Brayne C, Clare L, CFAS-Wales research team (2018). Social isolation, cognitive reserve, and cognition in healthy older people.
PLoS One,
13(8).
Abstract:
Social isolation, cognitive reserve, and cognition in healthy older people.
There is evidence to suggest that social isolation is associated with poor cognitive health, although findings are contradictory. One reason for inconsistency in reported findings may be a lack of consideration of underlying mechanisms that could influence this relationship. Cognitive reserve is a theoretical concept that may account for the role of social isolation and its association with cognitive outcomes in later life. Therefore, we aimed to examine the relationship between social isolation and cognition in later life, and to consider the role of cognitive reserve in this relationship. Baseline and two year follow-up data from the Cognitive Function and Ageing Study-Wales (CFAS-Wales) were analysed. Social isolation was assessed using the Lubben Social Network Scale-6 (LSNS-6), cognitive function was assessed using the Cambridge Cognitive Examination (CAMCOG), and cognitive reserve was assessed using a proxy measure of education, occupational complexity, and cognitive activity. Linear regression modelling was used to assess the relationship between social isolation and cognition. To assess the role of cognitive reserve in this relationship, moderation analysis was used to test for interaction effects. After controlling for age, gender, education, and physically limiting health conditions, social isolation was associated with cognitive function at baseline and two year follow-up. Cognitive reserve moderated this association longitudinally. Findings suggest that maintaining a socially active lifestyle in later life may enhance cognitive reserve and benefit cognitive function. This has important implications for interventions that may target social isolation to improve cognitive function.
Abstract.
Author URL.
Victor C, Jones I, Wu Y, Matthews F, Nelis S, Martyr A, Quinn C, Clare L (2018). THE IDEAL STUDY MODEL OF LIVING WELL WITH DEMENTIA.
Innovation in aging,
2(Suppl 1), 358-358.
Abstract:
THE IDEAL STUDY MODEL OF LIVING WELL WITH DEMENTIA
Abstract to live well with dementia may be characterised as maximising physical, mental and social wellbeing. In the UK this concept is present in policy documents and reports relating to dementia. This demonstrates a change of focus from concerns with symptoms and ‘deficits’ to a broader focus on participation and inclusion. The Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study uses measures of quality of life, life satisfaction and wellbeing to operationalise living well. We use data from the 1,550 IDEAL baseline interviews to model how these resources are individually and collectively associated with the ability to live well among people with mild to moderate dementia in community settings. We examine the relationships between the individual domains of psychological characteristics and psychological health, physical fitness and physical health, capitals, assets and resources, managing everyday life with dementia and social location and generated a living well latent factor. Psychological characteristics and psychological health is most strongly associated with living well, followed by physical fitness and physical health, capitals, assets and resources and managing everyday life with dementia and social location. This suggests that living well with dementia might be enhanced through improving psychological and physical health as well as addressing other social factors. Although the greatest gain in living well ratings is likely to be achieved through positive increases in factors within the psychological domain, all five domains, and all individual factors within the five domains, were individually associated with capability to live well with dementia.
Abstract.
Victor C, Jones I, Wu Y, Matthews F, Nelis S, Martyr A, Quinn C, Clare L (2018). THE IDEAL STUDY MODEL OF LIVING WELL WITH DEMENTIA. Innovation in Aging, 2(suppl_1), 358-358.
Roberts JL, Anderson ND, Guild E, Cyr A-A, Jones RSP, Clare L (2018). The benefits of errorless learning for people with amnestic mild cognitive impairment.
Neuropsychol Rehabil,
28(6), 984-996.
Abstract:
The benefits of errorless learning for people with amnestic mild cognitive impairment.
The aim of this study was to explore whether errorless learning leads to better outcomes than errorful learning in people with amnestic mild cognitive impairment (MCI), and to examine whether accuracy in error recognition relates to any observed benefit of errorless over errorful learning. Nineteen participants with a clinical diagnosis of amnestic MCI were recruited. A word-list learning task was used and learning was assessed by free recall, cued recall and recognition tasks. Errorless learning was significantly superior to errorful learning for both free recall and cued recall. The benefits of errorless learning were less marked in participants with better error recognition ability. Errorless learning methods are likely to prove more effective than errorful methods for those people with MCI whose ability to monitor and detect their own errors is impaired.
Abstract.
Author URL.
Yates JA, Clare L, Woods RT (2017). "You've got a friend in me": can social networks mediate the relationship between mood and MCI?.
BMC Geriatrics,
17(1).
Abstract:
"You've got a friend in me": can social networks mediate the relationship between mood and MCI?
Background: Social networks can change with age, for reasons that are adaptive or unwanted. Social engagement is beneficial to both mental health and cognition, and represents a potentially modifiable factor. Consequently this study explored this association and assessed whether the relationship between mild cognitive impairment (MCI) and mood problems was mediated by social networks. Methods: This study includes an analysis of data from the Cognitive Function and Ageing Study Wales (CFAS Wales). CFAS Wales Phase 1 data were collected from 2010 to 2013 by conducting structured interviews with older people aged over 65 years of age living in urban and rural areas of Wales, and included questions that assessed cognitive functioning, mood, and social networks. Regression analyses were used to investigate the associations between individual variables and the mediating role of social networks. Results: Having richer social networks was beneficial to both mood and cognition. Participants in the MCI category had weaker social networks than participants without cognitive impairment, whereas stronger social networks were associated with a decrease in the odds of experiencing mood problems, suggesting that they may offer a protective effect against anxiety and depression. Regression analyses revealed that social networks are a significant mediator of the relationship between MCI and mood problems. Conclusions: These findings are important, as mood problems are a risk factor for progression from MCI to dementia, so interventions that increase and strengthen social networks may have beneficial effects on slowing the progression of cognitive decline.
Abstract.
Clare L (2017). 'Living well with dementia has become a key focus of policy'.
PSYCHOLOGIST,
30, 66-69.
Author URL.
Pini S, Ingleson E, Megson M, Clare L, Wright P, Oyebode JR (2017). A Needs-led Framework for Understanding the Impact of Caring for a Family Member with Dementia. The Gerontologist, 58(2), e68-e77.
Poulos CJ, Bayer A, Beaupre L, Clare L, Poulos RG, Wang RH, Zuidema S, McGilton KS (2017). A comprehensive approach to reablement in dementia.
Alzheimer's and Dementia: Translational Research and Clinical Interventions,
3(3), 450-458.
Abstract:
A comprehensive approach to reablement in dementia
As society grapples with an aging population and increasing prevalence of disability, “reablement” as a means of maximizing functional ability in older people is emerging as a potential strategy to help promote independence. Reablement offers an approach to mitigate the impact of dementia on function and independence. This article presents a comprehensive reablement approach across seven domains for the person living with mild-to-moderate dementia. Domains include assessment and medical management, cognitive disability, physical function, acute injury or illness, assistive technology, supportive care, and caregiver support. In the absence of a cure or ability to significantly modify the course of the disease, the message for policy makers, practitioners, families, and persons with dementia needs to be “living well with dementia”, with a focus on maintaining function for as long as possible, regaining lost function when there is the potential to do so, and adapting to lost function that cannot be regained. Service delivery and care of persons with dementia must be reoriented such that evidence-based reablement approaches are integrated into routine care across all sectors.
Abstract.
Cox KL, Cyarto EV, Etherton-Beer C, Ellis KA, Alfonso H, Clare L, Liew D, Ames D, Flicker L, Almeida OP, et al (2017). A randomized controlled trial of physical activity with individual goal-setting and volunteer mentors to overcome sedentary lifestyle in older adults at risk of cognitive decline: the INDIGO trial protocol.
BMC Geriatrics,
17(1).
Abstract:
A randomized controlled trial of physical activity with individual goal-setting and volunteer mentors to overcome sedentary lifestyle in older adults at risk of cognitive decline: the INDIGO trial protocol
© 2017 the Author(s). Background: Increasing physical activity (PA) effectively in those who are inactive is challenging. For those who have subjective memory complaints (SMC) or mild cognitive impairment (MCI) this is a greater challenge necessitating the need for more engaging and innovative approaches. The primary aim of this trial is to determine whether a home-based 6-month PA intervention with individual goal-setting and peer mentors (GM-PA) can significantly increase PA levels in insufficiently active older adults at increased risk of developing Alzheimer's disease (AD). Methods: Community living 60-80 year olds with SMC or MCI who do not engage in more than 60 min per week of moderate intensity PA will be recruited from memory clinics and the community via media advertisements to participate in this randomized, single-blind controlled trial. All participants will receive an individually tailored home-based PA program of 150 min of moderate intensity walking/week for 6 months. The intervention group will undertake individual goal-setting and behavioral education workshops with mentor support via telephone (GM-PA). Those randomized to the control group will have standard education workshops and Physical Activity Liaison (PAL) contact via telephone (CO-PA). Increase in PA is the primary outcome, fitness, cognitive, personality, demographic and clinical parameters will be measured and a health economic analysis performed. A saliva sample will be collected for APOE e4 genotyping. All participants will have a goal-setting interview to determine their PA goals. Active volunteers aged 50-85 years will be recruited from the community randomized and trained to provide peer support as mentors (intervention group) or PALS (control group) for the 6-month intervention. Mentors and PALS will have PA, exercise self-efficacy and mentoring self-efficacy measured. Participants in both groups are asked to attend 3 workshops in 6 months. At the first workshop, they will meet their allocated Mentor or PAL who will deliver their respective programs and support via 6 telephone calls during the intervention. Discussion: If the GM-PA program is successful in increasing the PA levels of the target group it will potentially provide another strategy and community resource that can be translated into practice. Trial registration: Australia New Zealand Clinical Trials Registry ACTRN12613001181796. (29/10/2013) retrospectively registered.
Abstract.
Kolanowski AM, Fick DM, Litaker M, Mulhall P, Clare L, Hill N, Boustani M, Mogle JA (2017). COGNITIVE ACTIVITIES FOR DELIRIUM SUPERIMPOSED ON DEMENTIA: a RANDOMIZED CONTROLLED TRIAL. Innovation in Aging, 1(suppl_1), 1283-1283.
Kolanowski AM, Fick DM, Litaker M, Mulhall P, Clare L, Hill N, Boustani M, Mogle JA (2017). COGNITIVE ACTIVITIES FOR DELIRIUM SUPERIMPOSED ON DEMENTIA: a RANDOMIZED CONTROLLED TRIAL.
Innovation in aging,
1(Suppl 1), 1283-1283.
Abstract:
COGNITIVE ACTIVITIES FOR DELIRIUM SUPERIMPOSED ON DEMENTIA: a RANDOMIZED CONTROLLED TRIAL
Abstract Delirium is common in post-acute care (PAC) patients with dementia; its treatment is not established. We hypothesized that cognitive activities would reduce the duration and severity of delirium and improve cognitive and physical function to a greater extent than usual care. This was an NIH-funded single-blind randomized clinical trial conducted in eight PAC facilities. Participants were 283 community-dwelling older adults with dementia and delirium randomized to intervention or control. The intervention group received cognitive activities daily for up to 30 days. The control group received usual care. Primary outcomes were delirium duration (Confusion Assessment Method), and delirium severity (Delirium Rating Scale). Secondary outcomes were cognitive function (Digits Forward, Montreal Cognitive Assessment and CLOX) and physical function (Barthel Index). There were no differences between the groups for mean percentage of delirium-free days or delirium severity. Significant differences for secondary outcomes favoring intervention were found: executive function: 6.58 (95% CI: 6.12–7.04) vs. 5.89 (95% CI: 5.45–6.33), a difference of -0.69 (95% CI: 1.33- -0.06, p=0.03); and constructional praxis: 8.84 (95% CI: 8.83–9.34) vs. 7.53 (95% CI: 7.04–8.01), a difference of - 1.31 (95% CI: 2.01- -0.61, p=0.0003). After adjusting for baseline constructional praxis the group comparison was no longer significant. Average length of stay was shorter in intervention (36.09 days vs. 53.13 days, SE = 0.15, p = 0.01, negative binomial regression. Cognitive activities did not improve delirium but did improve executive function and reduced length of stay. Resolution of delirium may require more intense non-pharmacological management when the patient has dementia.
Abstract.
Opdebeeck C, Kudlicka A, Nelis S, Quinn C, Clare L (2017). COGNITIVE RESERVE IS ASSOCIATED WITH QUALITY OF LIFE, SELF-ESTEEM, AND SELF-EFFICACY IN LATER LIFE. Innovation in Aging, 1(suppl_1), 877-878.
Opdebeeck C, Kudlicka A, Nelis S, Quinn C, Clare L (2017). COGNITIVE RESERVE IS ASSOCIATED WITH QUALITY OF LIFE, SELF-ESTEEM, AND SELF-EFFICACY IN LATER LIFE.
Innovation in aging,
1(Suppl 1), 877-878.
Abstract:
COGNITIVE RESERVE IS ASSOCIATED WITH QUALITY OF LIFE, SELF-ESTEEM, AND SELF-EFFICACY IN LATER LIFE
Abstract with the growing older population worldwide there is increasing emphasis on helping this population age well. Cognitive reserve may provide a pathway to maintaining both cognitive and emotional health in later life. Previous research has shown that higher levels of cognitive reserve are associated with better cognitive function, reduced risk of dementia and lower levels of depressive symptoms. This study of 236 community-dwelling people aged 60+ sought to assess whether cognitive reserve is also associated with greater self-perceived quality of life, self-esteem and self-efficacy. Cognitive reserve was assessed with the Lifetime of Experiences Questionnaire, which assesses a combination of education, occupational complexity, and lifetime engagement in cognitive and social activity. Higher levels of cognitive reserve were associated with significantly higher levels of self-reported quality of life, self-esteem, and self-efficacy. Comparing the individual constituent elements of the cognitive reserve measure, education was the factor most strongly associated with self-efficacy, while engagement in cognitive and social activity in later life was the factor most strongly associated with quality of life and self-esteem. Occupational complexity was not associated with any of the dependent variables, suggesting the results were not attributable solely to socioeconomic status. Encouraging people to continue to engage in the cognitive and social activities associated with higher cognitive reserve may increase well-being in later life in terms of quality of life, self-esteem and self-efficacy as well as helping to maintain cognitive function.
Abstract.
Webster L, Groskreutz D, Grinbergs-Saull A, Howard R, O'Brien JT, Mountain G, Banerjee S, Woods B, Perneczky R, Lafortune L, et al (2017). Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations.
PLoS One,
12(6).
Abstract:
Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations.
BACKGROUND: There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. METHODS AND FINDINGS: We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. LIMITATIONS: Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. INTERPRETATION: This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value. TRIAL REGISTRATION: PROSPERO no. CRD42015027346.
Abstract.
Author URL.
Jones IR, Hillman A, Quinn C, Clare L (2017). DUALITIES OF DEMENTIA ACCOUNTS: BIOGRAPHICAL RECONSTRUCTION AND NARRATIVE ECONOMIES.
Innovation in aging,
1(Suppl 1), 1344-1345.
Abstract:
DUALITIES OF DEMENTIA ACCOUNTS: BIOGRAPHICAL RECONSTRUCTION AND NARRATIVE ECONOMIES
Abstract Given the increasing success of campaigns to ensure the voice of people with dementia is represented, there are a growing number of people in the early stages of dementia being called upon to account for their experience, as a means of developing a collective illness identity. This paper draws on qualitative interviews with IDEAL pilot study participants who were members of a patient advocacy group and who represent the voices of patients and carers in research. We explore two connected themes: firstly, the ways in which people with dementia participate in identity construction, performing biographical reconstruction to make sense of their lives and preserve their sense of self; and secondly, as representatives of the patient voice, these interviews produce dementia illness narratives that are a source of material and symbolic value. The paper reflects on the dualities and tensions within these different narratives.
Abstract.
Jones IR, Hillman A, Quinn C, Clare L (2017). DUALITIES OF DEMENTIA ACCOUNTS: BIOGRAPHICAL RECONSTRUCTION AND NARRATIVE ECONOMIES. Innovation in Aging, 1(suppl_1), 1344-1345.
Webster L, Groskreutz D, Grinbergs-Saull A, Howard R, O’Brien JT, Mountain G, Banerjee S, Woods B, Perneczky R, Lafortune L, et al (2017). Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations.
Health Technology Assessment,
21(26), 1-192.
Abstract:
Development of a core outcome set for disease modification trials in mild to moderate dementia: a systematic review, patient and public consultation and consensus recommendations
Background: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. Objectives: to agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI). Data sources: We included disease modification trials with quantitative outcomes of efficacy from (1) references from related systematic reviews in workstream 1; (2) searches of the Cochrane Dementia and Cognitive Improvement Group study register, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, EMBASE, Latin American and Caribbean Health Sciences Literature and PsycINFO on 11 December 2015, and clinical trial registries [International Standard Randomised Controlled Trial Number (ISRCTN) and clinicaltrials.gov] on 22 and 29 January 2016; and (3) hand-searches of reference lists of relevant systematic reviews from database searches. Review methods: the project consisted of four workstreams. (1) We obtained related core outcome sets and work from co-applicants. (2) We systematically reviewed published and ongoing disease modification trials to identify the outcomes used in different domains. We extracted outcomes used in each trial, recording how many used each outcome and with how many participants. We divided outcomes into the domains measured and searched for validation data. (3) We consulted with PPI participants about recommended outcomes. (4) We presented all the synthesised information at a conference attended by the wider body of National Institute for Health Research (NIHR) dementia researchers to reach consensus on a core set of outcomes. Results: We included 149 papers from the 22,918 papers screened, referring to 125 individual trials. Eighty-one outcomes were used across trials, including 72 scales [31 cognitive, 12 activities of daily living (ADLs), 10 global, 16 neuropsychiatric and three quality of life] and nine biological techniques. We consulted with 18 people for PPI. The conference decided that only cognition and biological markers are core measures of disease modification. Cognition should be measured by the Mini Mental State Examination (MMSE) or the Alzheimer’s Disease Assessment Scale - Cognitive subscale (ADAS-Cog), and brain changes through structural magnetic resonance imaging (MRI) in a subset of participants. All other domains are important but not core. We recommend using the Neuropsychiatric Inventory for neuropsychiatric symptoms: the Disability Assessment for Dementia for ADLs, the Dementia Quality of Life Measure for quality of life and the Clinical Dementia Rating scale to measure dementia globally. Limitations: Most of the trials included participants with Alzheimer’s disease, so recommendations may not apply to other types of dementia. We did not conduct economic analyses. The PPI consultation was limited to members of the Alzheimer’s Society Research Network. Conclusions: Cognitive outcomes and biological markers form the core outcome set for future disease modification trials, measured by the MMSE or ADAS-Cog, and structural MRI in a subset of participants.
Abstract.
Hindle JV, Watermeyer TJ, Roberts J, Martyr A, Lloyd-Williams H, Brand A, Gutting P, Hoare Z, Edwards RT, Clare L, et al (2017). Erratum to: Cognitive rehabiliation for Parkinson's disease dementia: a study protocol for a pilot randomised controlled trial.
Trials,
18(1).
Author URL.
Kudlicka AK, clare L, Hindle, JV, Spencer LE (2017). Everyday functioning of people with Parkinson’s disease and impairments in executive function: a qualitative investigation. Disability and Rehabilitation
Martyr A, Wu Y, Morris R, Hindle J, Rusted J, Thom J, Clarke R, Clare L (2017). FACTORS ASSOCIATED WITH QUALITY OF LIFE IN DEMENTIA: A CORRELATIONAL META-ANALYSIS. Innovation in Aging, 1(suppl_1), 1344-1344.
Martyr A, Wu Y, Morris R, Hindle J, Rusted J, Thom J, Clarke R, Clare L (2017). FACTORS ASSOCIATED WITH QUALITY OF LIFE IN DEMENTIA: A CORRELATIONAL META-ANALYSIS.
Innovation in aging,
1(Suppl 1), 1344-1344.
Abstract:
FACTORS ASSOCIATED WITH QUALITY OF LIFE IN DEMENTIA: A CORRELATIONAL META-ANALYSIS
Abstract Quality of life (QoL) in dementia has been extensively investigated, but to date no comprehensive meta-analysis has synthesized evidence from quantitative studies to identify variables associated with QoL. In our systematic search we identified 306 articles that met inclusion criteria. There was sufficient data to analyse the association of 32 variables with self-rated and 36 with informant-rated QoL. Greater depression and more impaired basic activities of daily living were moderately associated with poorer self-rated and informant-rated QoL, although there was considerable heterogeneity. Carer depression and greater carer burden were also moderately associated with poorer informant-rated QoL. Basic demographic variables such as age, education, gender, and marital status explained only a very limited proportion of variance, with low levels of heterogeneity. Other associations were small or negligible. The finding that diverse variables make small contributions to QoL suggests there may be individual differences in what is important for QoL.
Abstract.
Kudlicka A, Bayer A, Jones R, Kopelman M, Leroi I, Oyebode JR, Woods B, Clare L (2017). GOAL-ORIENTED COGNITIVE REHABILITATION IN EARLY-STAGE DEMENTIA: RESULTS FROM THE GREAT TRIAL.
Innovation in aging,
1(Suppl 1), 425-425.
Abstract:
GOAL-ORIENTED COGNITIVE REHABILITATION IN EARLY-STAGE DEMENTIA: RESULTS FROM THE GREAT TRIAL
Abstract Cognitive rehabilitation (CR) is an individualised intervention for people with early-stage dementia. CR aims to improve management of everyday activities and reduce functional disability through identifying personal goals, applying a problem-solving approach and implementing evidence-based rehabilitative strategies. We tested this approach in the multi-centre GREAT trial. Participants had early stage Alzheimer’s, vascular or mixed dementia (ICD-10 criteria, MMSE score ≥ 18) and a family carer willing to contribute. All participants identified goals before being randomised to receive either treatment as usual (TAU) or home-delivered CR (10 therapy sessions over 3 months followed by 4 maintenance sessions over 6 months). Participants were followed up 3 and 9 months post-randomisation, with assessments conducted by a researcher blind to group allocation. The primary outcome was self-reported and carer-reported goal attainment at 3 months. Secondary outcomes were participant quality of life, mood, self-efficacy and cognition, and carer stress, health status and quality of life. We randomised 475 participants, of whom 427 completed the trial (CR=209, TAU=218). There were statistically-significant large positive effects at 3-month follow-up for participant-rated goal attainment (d=.97, 95%CI. 75-1.19), corroborated by carers (d=1.11, 95%CI. 89-1.34). These effects were maintained at 9-month follow-up for both participant (d=.94, 95%CI. 71–1.17) and carer ratings (d=.96, 95%CI. 73-1.2). There were no significant differences in secondary outcomes. This major randomised controlled trial demonstrates that CR is effective in supporting functional ability in early-stage Alzheimer’s, vascular or mixed dementia. CR offers a means of enabling people with early-stage dementia to maintain independence and engagement in everyday activities.
Abstract.
Kudlicka A, Evans S, Pool J, Oyebode JR, Woods B, Clare L (2017). GREAT TRIAL: PERSONALISED COGNITIVE REHABILITATION GOALS OF PEOPLE WITH EARLY-STAGE DEMENTIA.
Innovation in aging,
1(Suppl 1), 873-873.
Abstract:
GREAT TRIAL: PERSONALISED COGNITIVE REHABILITATION GOALS OF PEOPLE WITH EARLY-STAGE DEMENTIA
Abstract the use of individual goals in psychosocial interventions ensures that these interventions are aligned with patient’s values and address their vital needs. There is preliminary evidence from small-scale studies that people with early stage dementia (PwD) can identify personally-meaningful therapy goals. Here we present evidence of successful goal-setting in a large multicentre RCT of cognitive rehabilitation for PwD. The Bangor Goal Setting Interview was used to elicit therapy goals related to everyday functioning for 473 people with early stage AD, vascular, or mixed dementia as part of the baseline assessment in the GREAT trial. Researchers and PwD worked together to identify up to three specific, measurable, achievable, personally relevant and time-bound therapy goals. Identified goals were analysed thematically to reveal common therapy needs. Over 1500 therapy goals were identified by 473 PwD. Goals were driven by the motivation to reduce dependence, improve safety and increase engagement in pleasurable activities. They related to better management of everyday life through improving orientation, contributing to household chores, managing medication, and locating lost items. There was also an emphasis on increase activity levels, with goals around participation in meaningful activities, socialisation, remembering names, exercising, and using new technology. The overwhelming majority of PwD in the GREAT trial were able to identify meaningful therapy objectives. These findings have implications for research, clinical practice, and policy. An understanding of the areas where PwD most want support can be used to develop genuinely person-centred care and provide targeted support where and when it is needed most.
Abstract.
Massimo L, Munoz E, Hill N, Mogle J, Mulhall P, McMillan CT, Clare L, Vandenbergh D, Fick D, Kolanowski A, et al (2017). Genetic and environmental factors associated with delirium severity in older adults with dementia.
Int J Geriatr Psychiatry,
32(5), 574-581.
Abstract:
Genetic and environmental factors associated with delirium severity in older adults with dementia.
OBJECTIVE: to determine (1) whether delirium severity was associated with Apolipoprotein E (APOE) genotype status and occupational complexity, a measure of cognitive reserve, in individuals with delirium superimposed on dementia; and (2) whether decline in delirium severity was associated with these same factors over a post-acute care (PAC) stay. METHODS: Control group data (n = 142) from a completed randomized clinical trial were used to address the aims of the study. Delirium severity was calculated by combining items from the Confusion Assessment Method and the Montreal Cognitive Assessment. APOE ε4 carriers versus non-carriers were considered. Occupational complexity, a measure of cognitive reserve, was derived from the Lifetime of Experiences Questionnaire. Covariates examined included age, gender, education, Clinical Dementia Rating Scale, and the Charlson comorbidity score. Data were nested (i.e. days nested within persons) and analyzed using multilevel models. RESULTS: the presence of an APOE ε4 allele and higher Clinical Dementia Rating Scale were associated with greater delirium severity at baseline. The presence of an APOE ε4 allele was also associated with greater delirium severity averaged across the PAC stay. Occupational complexity was not associated with baseline delirium severity or average daily delirium severity; however, individuals with low occupational complexity showed a significant decreased in delirium severity during the course of their PAC stay. CONCLUSIONS: Individual differences, including genetic factors and level of cognitive reserve, contribute to the severity of delirium in older adults with dementia. Copyright © 2016 John Wiley & Sons, Ltd.
Abstract.
Author URL.
Clare L, Nelis S, Wu Y, Martyr A, Knapp M, Henderson C, Lamont R, Matthews F (2017). IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE (THE IDEAL STUDY): COHORT PROFILE.
Innovation in aging,
1(Suppl 1), 1344-1344.
Abstract:
IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE (THE IDEAL STUDY): COHORT PROFILE
Abstract the IDEAL study population was recruited through a network of 29 National Health Service sites across England, Scotland and Wales. The baseline cohort (recruited August 2014 – June 2016) included 1500 community-dwelling individuals who had a clinical diagnosis of dementia and where possible their carers (N=1352). of these participants, 43% were women, 11% had early onset dementia (aged
Abstract.
Clare L, Nelis S, Wu Y, Martyr A, Knapp M, Henderson C, Lamont R, Matthews F (2017). IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE (THE IDEAL STUDY): COHORT PROFILE. Innovation in Aging, 1(suppl_1), 1344-1344.
Clare L (2017). IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE: EARLY FINDINGS FROM THE IDEAL COHORT. Innovation in Aging, 1(suppl_1), 1344-1344.
Clare L (2017). IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE: EARLY FINDINGS FROM THE IDEAL COHORT.
Innovation in aging,
1(Suppl 1), 1344-1344.
Abstract:
IMPROVING THE EXPERIENCE OF DEMENTIA AND ENHANCING ACTIVE LIFE: EARLY FINDINGS FROM THE IDEAL COHORT
Abstract Enabling people with dementia and carers to ‘live well’ with the condition is a key policy objective for most governments in the developed world. Living well with chronic illness or disability has been defined as ‘the best achievable state of health that encompasses all dimensions of physical, mental and social wellbeing’. The IDEAL study aims to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia, and to understand what ‘living well’ means from the perspective of people with dementia and carers. The study examines the way in which social capitals, assets and resources, the challenges posed by dementia, and the ways in which people adjust and cope affect well-being, life satisfaction and quality of life. Over a two-year period, we have recruited and interviewed 1500 people with early-stage dementia from across the UK, together with a carer wherever possible (carer n = 1352). All the participants will be followed up after 12 and 24 months. A smaller group is interviewed in more depth during each wave. In this symposium we present a profile of the IDEAL cohort followed by preliminary findings focused on (a) results of our systematic review of quantitative studies of variables associated with quality of life; (b) an analysis of levels of loneliness expressed by people with dementia and carers at the baseline interview; and (c) themes and methodological considerations arising from our initial round of qualitative interviews.
Abstract.
Quinn C, Jones IR, Clare L (2017). Illness representations in caregivers of people with dementia.
Aging Ment Health,
21(5), 553-561.
Abstract:
Illness representations in caregivers of people with dementia.
OBJECTIVES: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. METHOD: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. RESULTS: the majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. CONCLUSION: the extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.
Abstract.
Author URL.
Anstey KJ, Peters R, Clare L, Lautenschlager NT, Dodge HH, Barnes DE, Shahar S, Brodaty H, Rees G (2017). Joining forces to prevent dementia: the International Research Network on Dementia Prevention (IRNDP). International Psychogeriatrics, 29(11), 1757-1760.
Hillman A, Jones IR, Quinn C, Clare L (2017). LETTING GO OF COHERENCE: THE CHALLENGES OF REPRESENTING DEMENTIA.
Innovation in aging,
1(Suppl 1), 1345-1345.
Abstract:
LETTING GO OF COHERENCE: THE CHALLENGES OF REPRESENTING DEMENTIA
Abstract Drawing on IDEAL study in-depth interviews, this paper explores a sociological response to the ‘turn to personhood’ in qualitative research with people with dementia. Recognizing the voice of the person with dementia has led to important methodological developments to mitigate the practical difficulties of doing research with people for whom recalling events and reflecting on their meaning poses a challenge. This paper suggests that methods, including the qualitative interview, are imbued with a politics of selfhood in which individuals give coherence to experience and emotion. Such a politics jars with representations of dementia as a gradual decline in capacity, including a capacity to speak. The problem of representation in dementia research requires us to re-think method and methodology: firstly, to re-asses expectations of the research encounter; and secondly, to develop alternative interpretations of meaning which support difference in social and temporal frames, rather than seeking to eliminate them.
Abstract.
Hillman A, Jones IR, Quinn C, Clare L (2017). LETTING GO OF COHERENCE: THE CHALLENGES OF REPRESENTING DEMENTIA. Innovation in Aging, 1(suppl_1), 1345-1345.
Clare L, Kinman G (2017). Linda Clare: 'Living well with dementia has become a key focus of policy'. Psychologist, 30(7), 66-69.
Clare L, Wu YT, Teale JC, MacLeod C, Matthews F, Brayne C, Woods B (2017). Potentially modifiable lifestyle factors, cognitive reserve, and cognitive function in later life: a cross-sectional study.
PLoS Medicine,
14(3).
Abstract:
Potentially modifiable lifestyle factors, cognitive reserve, and cognitive function in later life: a cross-sectional study
© 2017 Clare et al. Background: Potentially modifiable lifestyle factors may influence cognitive health in later life and offer potential to reduce the risk of cognitive decline and dementia. The concept of cognitive reserve has been proposed as a mechanism to explain individual differences in rates of cognitive decline, but its potential role as a mediating pathway has seldom been explored using data from large epidemiological studies. We explored the mediating effect of cognitive reserve on the cross-sectional association between lifestyle factors and cognitive function in later life using data from a population-based cohort of healthy older people. Methods and findings: We analysed data from 2,315 cognitively healthy participants aged 65 y and over in the Cognitive Function and Ageing Study Wales (CFAS-Wales) cohort collected in 2011–2013. Linear regression modelling was used to investigate the overall associations between five lifestyle factors—cognitive and social activity, physical activity, diet, alcohol consumption, and smoking—and cognition, adjusting for demographic factors and chronic conditions. Mediation analysis tested for indirect effects of the lifestyle factors on cognition via cognitive reserve. After controlling for age, gender, and the presence of chronic conditions, cognitive and social activity, physical activity, healthy diet, and light-to-moderate alcohol consumption were positively associated with cognitive function, together accounting for 20% (95% CI 17%–23%) of variance in cognitive test scores. Cognitive reserve was an important mediator of this association, with indirect effects via cognitive reserve contributing 21% (95% CI 15%–27%) of the overall effect on cognition. The main limitations of the study derive from the cross-sectional nature of the data and the challenges of accurately measuring the latent construct of cognitive reserve. Conclusions: Cross-sectional associations support the view that enhancing cognitive reserve may benefit cognition, and maintenance of cognitive health may be supported by a healthy and active lifestyle, in later life.
Abstract.
Clare L (2017). Rehabilitation for people living with dementia: a practical framework of positive support.
PLoS Med,
14(3).
Abstract:
Rehabilitation for people living with dementia: a practical framework of positive support.
In a Perspective, Linda Clare proposes using a cognitive rehabilitation approach for people living with dementia.
Abstract.
Author URL.
Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, et al (2017). Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.
Aging and Mental Health,
21(1), 4-17.
Abstract:
Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice
Background: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. Method: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). Results: the social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. Conclusion: a consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.
Abstract.
Yates JA, Clare L, Woods RT (2017). Subjective memory complaints, mood and MCI: a follow-up study.
Aging and Mental Health,
21(3), 313-321.
Abstract:
Subjective memory complaints, mood and MCI: a follow-up study
Objectives: Subjective memory complaints (SMC) are common in older people and previous research has shown an association with mood problems, such as depression and anxiety. SMC form part of the criteria for many definitions of mild cognitive impairment (MCI), but there is controversy over whether they should be included as they may be related more strongly to mood than to objective cognitive impairment. This study aims to clarify the relationship between mood and SMC in people with MCI. Method: This paper reports an analysis of data from the Medical Research Council Cognitive Function and Ageing study. Structured interviews were conducted with community-dwelling older people to assess a range of aspects of cognitive functioning and mood. Data from two time points approximately 24 months apart were used in this analysis. At baseline, participants without dementia or severe cognitive impairment were categorised into three groups according to cognitive status. Mood was investigated by assessing symptoms of anxiety and depression which were defined using a diagnostic algorithm. Associations were tested using logistic regression and chi square analyses. Results: a clear association was shown between SMC and mood, both cross-sectionally and over time. The relationship between our two competing definitions of MCI suggested that mood problems were more strongly related to the presence of SMC than objective cognitive impairment. Conclusion: SMC may be a function of anxiety and depression rather than being related to objective cognitive function. This questions whether SMC should be included in definitions of MCI.
Abstract.
Bahar-Fuchs A, Webb S, Bartsch L, Clare L, Rebok G, Cherbuin N, Anstey KJ (2017). Tailored and Adaptive Computerized Cognitive Training in Older Adults at Risk for Dementia: a Randomized Controlled Trial.
J Alzheimers Dis,
60(3), 889-911.
Abstract:
Tailored and Adaptive Computerized Cognitive Training in Older Adults at Risk for Dementia: a Randomized Controlled Trial.
BACKGROUND: Computerized Cognitive Training (CCT) has been shown to improve cognitive function in older adults with mild cognitive impairment (MCI) or mood-related neuropsychiatric symptoms (MrNPS), but many questions remain unresolved. OBJECTIVE: to evaluate the extent to which CCT benefits older adults with both MCI and MrNPS, and its effects on meta-cognitive and non-cognitive outcomes, as well as establish whether adapting difficulty levels and tailoring to individuals' profile is superior to generic training. METHODS: Older adults with MCI (n = 9), MrNPS (n = 11), or both (MCI+, n = 25) were randomized into a home-based individually-tailored and adaptive CCT (n = 21) or an active control condition (AC; n = 23) in a double-blind design. Interventions lasted 8-12 weeks and outcomes were assessed after the intervention, and at a 3-month follow-up. RESULTS: Participants in both conditions reported greater satisfaction with their everyday memory following intervention and at follow-up. However, participants in the CCT condition showed greater improvement on composite measures of memory, learning, and global cognition at follow-up. Participants with MrNPS in the CCT condition were also found to have improved mood at 3-month follow-up and reported using fewer memory strategies at the post-intervention and follow-up assessments. There was no evidence that participants with MCI+ were disadvantaged relative to the other diagnostic conditions. Finally, informant-rated caregiver burden declined at follow-up assessment in the CCT condition relative to the AC condition. CONCLUSIONS: Home-based CCT with adaptive difficulty and personal tailoring appears superior to more generic CCT in relation to both cognitive and non-cognitive outcomes. Mechanisms of treatment effect and future directions are discussed.
Abstract.
Author URL.
Hindle JV, Martin‐Forbes PA, Martyr A, Bastable AJM, Pye KL, Mueller Gathercole VC, Thomas EM, Clare L (2017). The effects of lifelong cognitive lifestyle on executive function in older people with Parkinson's disease.
International Journal of Geriatric Psychiatry,
32(12).
Abstract:
The effects of lifelong cognitive lifestyle on executive function in older people with Parkinson's disease
ObjectiveActive lifelong cognitive lifestyles increase cognitive reserve and have beneficial effects on global cognition, cognitive decline and dementia risk in Parkinson's disease (PD). Executive function is particularly impaired even in early PD, and this impacts on quality of life. The effects of lifelong cognitive lifestyle on executive function in PD have not been studied previously. This study examined the association between lifelong cognitive lifestyle, as a proxy measure of cognitive reserve, and executive function in people with PD.MethodsSixty‐nine people diagnosed with early PD without dementia were recruited as part of the Bilingualism as a protective factor in Age‐related Neurodegenerative Conditions study. Participants completed a battery of tests of executive function. The Lifetime of Experiences Questionnaire was completed as a comprehensive assessment of lifelong cognitive lifestyle. Non‐parametric correlations compared clinical measures with executive function scores. Cross‐sectional analyses of covariance were performed comparing the performance of low and high cognitive reserve groups on executive function tests.ResultsCorrelational analyses showed that better executive function scores were associated with younger age, higher levodopa dose and higher Lifetime of Experiences Questionnaire scores. Higher cognitive reserve was associated with better motor function, but high and low cognitive reserve groups did not differ in executive function.ConclusionsCognitive reserve, although associated with global cognition, does not appear to be associated with executive function. This differential effect may reflect the specific cognitive profile of PD. The long‐term effects of cognitive reserve on executive function in PD require further exploration. Copyright © 2017 John Wiley & Sons, Ltd.
Abstract.
Yates JA, Clare L, Woods RT, Cognitive Function and Ageing Study: Wales (2017). What is the Relationship between Health, Mood, and Mild Cognitive Impairment?.
J Alzheimers Dis,
55(3), 1183-1193.
Abstract:
What is the Relationship between Health, Mood, and Mild Cognitive Impairment?
Mild cognitive impairment (MCI) often co-exists with mood problems, and both cognitive functioning and mood are known to be linked with health. This study aims to investigate how health, mood, and cognitive impairment interact. Health is often assessed using a single proxy measure, but the use of a range of measures can provide a more informative picture and allows for combination into a comprehensive measure of health. We report an analysis of data from the Cognitive Function and Ageing Study Wales (CFAS Wales, N = 3,173), in which structured interviews with older people captured measures of cognition, mood, and health. Each measure of health was assessed independently in relation to cognition and mood, and then all measures were combined to form a latent health variable and tested using structural equation modeling (SEM). SEM confirmed the association between health and cognition, with depression acting as a mediator. All measures of health were individually associated with levels of anxiety and depression. Participants reporting mood problems were less likely to engage in physical activity and more likely to report poor or fair health, have more comorbid health conditions, use more services, and experience difficulties with instrumental activities of daily living. Perceived health was associated with cognitive status; participants with MCI were more likely to report fair or poor health than participants who were cognitively unimpaired. Careful intervention and encouragement to maintain healthy lifestyles as people age could help to reduce the risk of both mood problems and cognitive decline.
Abstract.
Author URL.
Yates JA, Clare L, Woods B (2017). YOU’VE GOT A FRIEND IN ME: CAN SOCIAL ENGAGEMENT MEDIATE THE RELATIONSHIP BETWEEN MOOD AND MCI?. Innovation in Aging, 1(suppl_1), 1179-1179.
Yates JA, Clare L, Woods B (2017). YOU’VE GOT A FRIEND IN ME: CAN SOCIAL ENGAGEMENT MEDIATE THE RELATIONSHIP BETWEEN MOOD AND MCI?.
Innovation in aging,
1(Suppl 1), 1179-1179.
Abstract:
YOU’VE GOT A FRIEND IN ME: CAN SOCIAL ENGAGEMENT MEDIATE THE RELATIONSHIP BETWEEN MOOD AND MCI?
Abstract Social networks can change with age, for reasons that are adaptive or unwanted. A larger social network is beneficial to both mental health and cognition. Consequently this study explored this association and assessed the mediation of the relationship between mild cognitive impairment (MCI) and mood problems by social network size. This study includes an analysis of data from the Cognitive Function and Ageing Study Wales (CFAS Wales). CFAS Wales data were collected by conducting structured interviews with older people aged over 65 years of age living in urban and rural areas of Wales, and included questions that assessed cognitive functioning, mood, and social networks. This study demonstrates that having a larger social network is beneficial to both mood and cognition. Correlation analyses suggest that as social network increases, symptoms of anxiety and depression decrease. Regression analyses reveal that social network size is a significant mediator of the relationship between MCI and mood problems.These findings are important, as mood problems are a risk factor for progression from MCI to dementia, so interventions that increase and strengthen social networks may have beneficial effects on slowing the progression of cognitive decline. Social network size represents a potentially modifiable variable, in that more opportunities to socialise can be explored and implemented. For example, many older people struggle to access transport to attend social situations, which could be acted upon, and additionally, advances in technology could be utilised to provide social opportunities for older people.
Abstract.
Clare L, Kudlicka A, Bayer A, Jones RW, John Knapp MR, Kopelman M, Leroi I, Oyebode J, Pool J, Woods B, et al (2017). [O3–02–05]: GOAL‐ORIENTED COGNITIVE REHABILITATION IN EARLY‐STAGE ALZHEIMER's AND RELATED DEMENTIAS: RESULTS FROM a MULTI‐CENTRE, SINGLE‐BLIND, RANDOMISED CONTROLLED TRIAL (THE GREAT TRIAL). Alzheimer's & Dementia, 13(7S_Part_18).
Webster LA, Groskreutz D, Grinbergs‐Saull A, Howard RJ, O'Brien JT, Mountain G, Banerjee S, Woods B, Perneczky R, Lafortune L, et al (2017). [P4–019]: a CORE OUTCOME SET FOR DISEASE MODIFICATION TRIALS IN MILD‐TO‐MODERATE DEMENTIA: a SYSTEMATIC REVIEW AND CONSENSUS RECOMMENDATIONS. Alzheimer's & Dementia, 13(7S_Part_26), p1261-p1262.
Martyr A, Nelis SM, Quinn C, Wu Y, Lamont RA, Henderson C, Clarke R, Hindle JV, Jones IR, Morris RG, et al (2017). [P4–562]: LIVING WELL WITH DEMENTIA: a SYSTEMATIC REVIEW. Alzheimer's & Dementia, 13(7S_Part_32), p1567-p1568.
Quinn C, Toms G, Jones C, Brand A, Edwards RT, Sanders F, Clare L (2016). A pilot randomized controlled trial of a self-management group intervention for people with early-stage dementia (The SMART study).
International Psychogeriatrics,
28(5), 787-800.
Abstract:
A pilot randomized controlled trial of a self-management group intervention for people with early-stage dementia (The SMART study)
Background: Self-management equips people to manage the symptoms and lifestyle changes that occur in long-term health conditions; however, there is limited evidence about its effectiveness for people with early-stage dementia. This pilot randomized controlled trial (RCT) explored the feasibility of a self-management intervention for people with early-stage dementia. Methods: the participants were people with early-stage dementia (n = 24) and for each participant a caregiver also took part. Participants were randomly allocated to either an eight-week self-management group intervention or treatment as usual (TAU). Assessments were conducted at baseline, three months and six months post-randomization by a researcher blind to group allocation. The primary outcome measure was self-efficacy score at three months. Results: Thirteen people with dementia were randomized to the intervention and 11 to TAU. Two groups were run, the first consisting of six people with dementia and the second of seven people with dementia. There was a small positive effect on self-efficacy with the intervention group showing gains in self-efficacy compared to the TAU group at three months (d = 0.35), and this was maintained at six months (d = 0.23). In terms of intervention acceptability, attrition was minimal, adherence was good, and satisfaction ratings were high. Feedback from participants was analyzed with content analysis. The findings suggest the positive aspects of the intervention were that it fostered independence and reciprocity, promoted social support, offered information, and provided clinician support. Conclusions: This study has provided preliminary evidence that self-management may be beneficial for people with early-stage dementia.
Abstract.
Quinn C, Toms G, Anderson D, Clare L (2016). A review of self-management interventions for people with dementia and mild cognitive impairment.
Journal of Applied Gerontology,
35(11), 1154-1188.
Abstract:
A review of self-management interventions for people with dementia and mild cognitive impairment
Self-management offers a way of helping people with dementia or mild cognitive impairment (MCI) to play an active role in managing their condition. Barlow, Wright, Sheasby, Turner, and Hainsworth have defined self-management as the "individual's ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition." Although commonly used in other chronic health conditions, there has been relatively little exploration of the role of self-management in dementia or MCI. This review aimed to identify group-based psychosocial interventions for people with dementia or MCI that incorporate significant elements of self-management. Fifteen interventions were included in the review: 12 for people with dementia and 3 for participants with MCI. In both the dementia and MCI interventions, the most commonly included self-management components were information, communication, and social support, and skills training. The review findings indicate that components of self-management have been incorporated into group-based interventions for people with dementia and MCI. Further studies are needed to address the methodological limitations of the included studies and to determine the effectiveness of self-management interventions with these populations.
Abstract.
Quinn C, Toms G, Davies S, Davies M, Clare L (2016). A self-management group for people with dementia. Journal of Dementia Care, 24, 29-32.
Kolanowski A, Mogle J, Fick D, Campbell N, Hill N, Mulhall P, Colancecco E, Behrens L, Boustani M, Clare L, et al (2016). Anticholinergic Exposure During Rehabilitation: Association with Cognitive and Physical Function.
NURSING RESEARCH,
65(2), E96-E97.
Author URL.
Clare L, Whitaker CJ, Craik FIM, Bialystok E, Martyr A, Martin-Forbes PA, Bastable AJM, Pye KL, Quinn C, Thomas EM, et al (2016). Bilingualism, executive control, and age at diagnosis among people with early-stage Alzheimer's disease in Wales.
Journal of Neuropsychology,
10(2), 163-185.
Abstract:
Bilingualism, executive control, and age at diagnosis among people with early-stage Alzheimer's disease in Wales
The observation of a bilingual advantage in executive control tasks involving inhibition and management of response conflict suggests that being bilingual might contribute to increased cognitive reserve. In support of this, recent evidence indicates that bilinguals develop Alzheimer's disease (AD) later than monolinguals, and may retain an advantage in performance on executive control tasks. We compared age at the time of receiving an AD diagnosis in bilingual Welsh/English speakers (n = 37) and monolingual English speakers (n = 49), and assessed the performance of bilinguals (n = 24) and monolinguals (n = 49) on a range of executive control tasks. There was a non-significant difference in age at the time of diagnosis, with bilinguals being on average 3 years older than monolinguals, but bilinguals were also significantly more cognitively impaired at the time of diagnosis. There were no significant differences between monolinguals and bilinguals in performance on executive function tests, but bilinguals appeared to show relative strengths in the domain of inhibition and response conflict. Bilingual Welsh/English speakers with AD do not show a clear advantage in executive function over monolingual English speakers, but may retain some benefits in inhibition and management of response conflict. There may be a delay in onset of AD in Welsh/English bilinguals, but if so, it is smaller than that found in some other clinical populations. In this Welsh sample, bilinguals with AD came to the attention of services later than monolinguals, and reasons for this pattern could be explored further.
Abstract.
Hindle JV, Watermeyer TJ, Roberts J, Martyr A, Lloyd-Williams H, Brand A, Gutting P, Hoare Z, Tudor-Edwards R, Clare L, et al (2016). Cognitive rehabilitation for Parkinson's disease dementia: study protocol for a randomized controlled trial (CORD-PD).
Trials,
17, 1-9.
Abstract:
Cognitive rehabilitation for Parkinson's disease dementia: study protocol for a randomized controlled trial (CORD-PD)
Background
There is growing interest in developing non-pharmacological treatments to address the cognitive deficits apparent in Parkinson’s disease dementia and dementia with Lewy bodies. Cognitive rehabilitation is a goal-oriented behavioural intervention which focuses on improving everyday functioning through management of cognitive difficulties; it has been shown to be effective in Alzheimer’s disease. To date, no studies have assessed its potential efficacy for addressing the impact of cognitive impairment in people with Parkinson’s disease or dementia with Lewy bodies.
Methods/design
Participants (n = 45) will be recruited from movement disorders, care for the elderly and memory clinics. Inclusion criteria include: a diagnosis of Parkinson’s disease, Parkinson’s disease dementia or dementia with Lewy bodies according to consensus criteria and an Addenbrooke’s Cognitive Examination – III score of ≤ 82. Exclusion criteria include: a diagnosis of any other significant neurological condition; major psychiatric disorder, including depression, which is not related to the patient’s Parkinson’s disease and unstable medication use for their physical or cognitive symptoms. A single-blind pilot randomised controlled trial, with concurrent economic evaluation, will compare the relative efficacy of cognitive rehabilitation with that of two control conditions. Following a goal-setting interview, the participants will be randomised to one of the three study arms: cognitive rehabilitation (eight weekly sessions), relaxation therapy (eight weekly sessions) or treatment as usual. Randomisation and treatment group allocation will be carried out by a clinical trials unit using a dynamic adaptive sequential randomisation algorithm. The primary outcomes are patients’ perceived goal attainment at a 2-months post-intervention assessment and a 6-months follow-up. Secondary outcomes include patients’ objective cognitive performance (on tests of memory and executive function) and satisfaction with goal attainment, carers’ perception of patients’ goal attainment and patients’ and carers’ health status and psychosocial well-being, measured at the same time points. Cost-effectiveness will be examined to explore the design of a larger cost-effectiveness analysis alongside a full trial.
Discussion
This pilot study will evaluate the application of cognitive rehabilitation for the management of cognitive difficulties associated with Parkinson’s disease dementia and dementia with Lewy bodies. The results of the study will inform the design of a fully powered randomised controlled trial.
Abstract.
Opdebeeck C, Martyr A, Clare L (2016). Cognitive reserve and cognitive function in healthy older people: a meta-analysis.
Aging, Neuropsychology, and Cognition,
23(1), 40-60.
Abstract:
Cognitive reserve and cognitive function in healthy older people: a meta-analysis
The associations between proxy measures of cognitive reserve (CR) and cognition vary across studies and cognitive domains. This meta-analysis aimed to assess the relationship between CR and cognition in multiple domains (memory, executive function, visuospatial ability, and language). CR was considered in terms of three key proxy measures - educational level, occupational status, and engagement in cognitively stimulating activities - individually and in combination. One-hundred and thirty-five studies representing 128,328 participants were included. of these, 109 used a measure of education, 19 used a measure of occupation, 31 used a measure of participation in cognitively stimulating activities, and 6 used a combination of these. All three proxy measures had a modest positive association with cognition; occupational status and cognitive activities showed the most variation across cognitive domains. This supports the view that the commonly used proxy measures of CR share an underlying process but that each additionally provides a unique contribution to CR.
Abstract.
Ciblis AS, Butler M-L, Quinn C, Clare L, Bokde ALW, Mullins PG, McNulty JP (2016). Current Practice in the Referral of Individuals with Suspected Dementia for Neuroimaging by General Practitioners in Ireland and Wales.
PLoS One,
11(3).
Abstract:
Current Practice in the Referral of Individuals with Suspected Dementia for Neuroimaging by General Practitioners in Ireland and Wales.
OBJECTIVES: While early diagnosis of dementia is important, the question arises whether general practitioners (GPs) should engage in direct referrals. The current study investigated current referral practices for neuroimaging in dementia, access to imaging modalities and investigated related GP training in Ireland and North Wales. METHODS: a questionnaire was distributed to GPs in the programme regions which included approximately two thirds of all GPs in the Republic of Ireland and all general practitioners in North Wales. A total of 2,093 questionnaires were issued. RESULTS: 48.6% of Irish respondents and 24.3% of Welsh respondents directly referred patients with suspected dementia for neuroimaging. Irish GPs reported greater direct access to neuroimaging than their Welsh counterparts. A very small percentage of Irish and Welsh GPs (4.7% and 10% respectively) had received training in neuroimaging and the majority who referred patients for neuroimaging were not aware of any dementia-specific protocols for referrals (93.1% and 95% respectively). CONCLUSIONS: the benefits of direct GP access to neuroimaging investigations for dementia have yet to be established. Our findings suggest that current GP speciality training in Ireland and Wales is deficient in dementia-specific and neuroimaging training with the concern being that inadequate training will lead to inadequate referrals. Further training would complement guidelines and provide a greater understanding of the role and appropriateness of neuroimaging techniques in the diagnosis of dementia.
Abstract.
Author URL.
Clare L (2016). Developing Awareness about Awareness in Early-Stage Dementia.
Dementia,
1(3), 295-312.
Abstract:
Developing Awareness about Awareness in Early-Stage Dementia
Unawareness in dementia is often viewed as a ‘symptom’ that is wholly or primarily the product of biological factors. While neurological damage may be sufficient to produce unawareness in some disorders, it is argued that this is not generally the case in early-stage dementia. Instead, it is suggested that the apparent degree of awareness is an expression of adaptive psychological responses constructed in a social situation in the context of neurologically based cognitive impairment. Drawing on examples from detailed interviews with people who have dementia and their partners, the contribution of psychological and social factors to the expression of awareness is explored. It is further argued that, because evaluations of awareness are constructed in dialogue through the interpretative activity of the researcher or clinician, reflexivity is essential in considering awareness.
Abstract.
Birchley G, Jones K, Huxtable R, Dixon J, Kitzinger J, Clare L (2016). Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty.
BMC Medical Ethics,
17(1).
Abstract:
Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty
Background: in most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of 'good death' to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis. Methods: to capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature. Results: Initial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as 'natural' and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies. Conclusions: Together these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury.
Abstract.
Kolanowski A, Fick D, Litaker M, Mulhall P, Clare L, Hill N, Mogle J, Boustani M, Gill D, Yevchak-Sillner A, et al (2016). Effect of Cognitively Stimulating Activities on Symptom Management of Delirium Superimposed on Dementia: a Randomized Controlled Trial.
Journal of the American Geriatrics Society,
64(12), 2424-2432.
Abstract:
Effect of Cognitively Stimulating Activities on Symptom Management of Delirium Superimposed on Dementia: a Randomized Controlled Trial
Objective: to determine whether cognitively stimulating activities would reduce duration and severity of delirium and improve cognitive and physical function to a greater extent than usual care. Design: Single-blind randomized clinical trial. Setting: Eight post-acute care (PAC) facilities. Participants: Community-dwelling older adults with dementia and delirium (N = 283). Intervention: Research staff provided cognitively stimulating activities daily for up to 30 days. Measurements: Primary outcomes were delirium duration (Confusion Assessment Method) and delirium severity (Delirium Rating Scale). Secondary outcomes were cognitive function (Digits Forward, Montreal Cognitive Assessment, CLOX) and physical function (Barthel Index). Results: Mean percentage of delirium-free days (intervention: 64.8%, 95% confidence interval (CI) = 59.6–70.1; control: 68.7%, 95% CI = 63.9–73.6; P =.37, Wilcoxon rank sum test) and delirium severity (range 0–39: intervention: 10.77, 95% CI = 10.10–11.45; control: 11.15, 95% CI = 10.50–11.80; difference 0.37, 95% CI = 0.56–1.31, P =.43) were similar in both groups. Significant differences for secondary outcomes favoring intervention were found (executive function (range 0–15): intervention: 6.58, 95% CI = 6.12–7.04; control: 5.89, 95% CI = 5.45–6.33; difference −0.69, 95% CI = 1.33 to −0.06, P =.03; constructional praxis (range 0–15): intervention: 8.84, 95% CI = 8.83–9.34; control: 7.53, 95% CI = 7.04–8.01; difference −1.31, 95% CI = 2.01 to −0.61, P
Abstract.
Clare L, Whitaker CJ, Martyr A, Martin-Forbes PA, Bastable AJM, Pye KL, Quinn C, Thomas EM, Mueller Gathercole VC, Hindle JV, et al (2016). Executive control in older Welsh monolinguals and bilinguals.
Journal of Cognitive Psychology,
28(4), 412-426.
Abstract:
Executive control in older Welsh monolinguals and bilinguals
Evidence for a bilingual advantage in executive control has led to the suggestion that being bilingual might protect against late-life cognitive decline. We assessed the performance of socially homogeneous groups of older (≥ 60 years) bilingual Welsh/English (n = 50) and monolingual English (n = 49) speakers on a range of executive control tasks yielding 17 indices for comparison. Effect sizes (>. 2) favoured monolinguals on 10 indices, with negligible differences observed on the remaining 7 indices. Univariate analyses indicated that monolinguals performed significantly better on two of 17 indices. Multivariate analysis indicated no significant overall differences between the two groups in performance on executive tasks. Older Welsh bilinguals do not show a bilingual advantage in executive control, and where differences are observed, these tend to favour monolinguals. A possible explanation may lie in the nature of the sociolinguistic context and its influence on cognitive processing in the bilingual group.
Abstract.
Watermeyer TJ, Hindle JV, Roberts J, Lawrence CL, Martyr A, Lloyd-Williams H, Brand A, Gutting P, Hoare Z, Tudor Edwards R, et al (2016). Goal setting for cognitive rehabilitation in mild to moderate Parkinson's disease dementia and dementia with Lewy bodies. Parkinson’s Disease, 2016
Clare L, Quinn C, Jones IR, Woods RT (2016). I don’t think of it as an illness’: illness representations in mild to moderate dementia. Journal of Alzheimer's Disease
Wu Y-T, Teale J, Matthews F, Brayne C, Woods R, Clare L (2016). Lifestyle factors, cognitive reserve, and cognitive function: results from the Cognitive Function and Ageing Study Wales, a population-based cohort. Lancet, The, 388, S114-S114.
Pearce A, Clare L, Pistrang N (2016). Managing Sense of Self.
Dementia,
1(2), 173-192.
Abstract:
Managing Sense of Self
Despite an increasing interest in the experiences of people who have been diagnosed with dementia, there is still a dearth of research into how people cope with the onset of the illness. This study uses qualitative methodology to examine the appraisals and coping processes of 20 men diagnosed with early-stage Alzheimer’s disease. Semi-structured interviews were conducted with the men and their wives. These were analysed using Interpretative Phenomenological Analysis. The men’s accounts suggested that they attempted to manage their sense of self by balancing their wish to maintain a prior sense of self against their need to reappraise and construct a new sense of self. This seemed to be an ongoing, circular process. Ways in which services can assist men in the process of managing their sense of self are explored.
Abstract.
Clare L, Shakespeare P (2016). Negotiating the Impact of Forgetting.
Dementia,
3(2), 211-232.
Abstract:
Negotiating the Impact of Forgetting
Dialectical and social constructionist approaches to dementia emphasize the importance of social interaction, and recent work has begun to call for a more relationship-based approach. However, little attention has yet been paid to the interactions of couples where one partner has early-stage dementia. This article describes some of the findings from an exploratory, qualitative study investigating conversational interactions between people with early-stage dementia and their spouses. Analysis of data from ten couples draws primarily on voice-relational analytic methods to explore how these couples use talk in conversation to negotiate and co-construct an account of their situation, and to outline the dimensions of resistance in this context. The findings suggest a need to attend to interaction and conversation from the very earliest stages of dementia. The concept of resistance, as evidenced in the interactions presented here, provides a framework that can assist in this endeavour.
Abstract.
Clare L, Roth I, Pratt R (2016). Perceptions of change over time in early-stage Alzheimer's disease.
Dementia,
4(4), 487-520.
Abstract:
Perceptions of change over time in early-stage Alzheimer's disease
Emerging models of subjective experience, awareness and coping in early-stage dementia may usefully be enhanced by incorporating a temporal perspective. As an initial step in this direction, we undertook a prospective one-year follow-up of participants with a diagnosis of early-stage Alzheimer's disease whose accounts had contributed to the development of Clare's phenomenological model of awareness incorporating the continuum model of coping in early-stage dementia. All 12 participants from the original study completed a follow-up interview one year later. Interpretative phenomenological analysis was used to identify emergent themes. All participants continued to demonstrate some awareness of difficulties with memory, but individuals varied in their evaluations of the extent and implications of these changes, with the majority tending towards more normalizing explanations. Many were nevertheless making practical adjustments to their activities, and the need to renegotiate relationships was a prominent issue. Subsequently, the data were examined for evidence of the themes identified in the original study, the initial model was reapplied, and changes in individual coping style over time were explored through case study analysis. The range of processes and coping styles observed across participants 12 months earlier was still apparent, with some indication of increased polarization between self-maintaining and self-adjusting styles of coping. A small number of participants showed significant changes in coping style, with changes occurring in both directions. The findings suggest that expression of awareness interacts with coping style, illustrating the need to consider both factors in combination in order to better understand individual expressions of awareness of change.
Abstract.
Mason E, Clare L, Pistrang N (2016). Processes and experiences of mutual support in professionally-led support. groups for people with early-stage dementia.
Dementia,
4(1), 87-112.
Abstract:
Processes and experiences of mutual support in professionally-led support. groups for people with early-stage dementia
Participation in a support group is increasingly offered to those diagnosed with early-stage dementia; however, empirical data about such groups for this population remain scarce. This study aimed to investigate the mutual support processes that occur in dementia support groups and how members perceive the groups. Eleven individuals from two support groups participated; three sessions of each group were videotaped and semi-structured interviews were conducted with individual members. Quantitative analysis of the videotapes indicated that only a minority of responses were classified as helping behaviours, and that facilitators played a highly active role in the group interactions. The interview data were analysed qualitatively; the themes identified related to aspects of the group that participants found helpful and unhelpful, and their perceptions of how the group operated. The findings have theoretical implications regarding the role of support groups in creating and maintaining social identities, as well as practical implications for how professionals might facilitate these groups.
Abstract.
Lamont RA, Nelis SM, Quinn C, Clare L (2016). Social Support and Attitudes to Aging in Later Life.
The International Journal of Aging and Human DevelopmentAbstract:
Social Support and Attitudes to Aging in Later Life
Negative attitudes to aging are a risk factor for poor health and well-being. The current study sought to examine satisfaction with social support as a potentially modifiable factor that might facilitate the development of more positive attitudes to aging. A convenience sample of 501 older respondents (Mage = 72.06) reported on frequency of social support and their satisfaction with it, as well as completing a rating of attachment (model of the self and others), a measure of attitudes to aging, and a number of background measures. Results indicated that better subjective health, younger age, and greater satisfaction with social support were all significant predictors of more positive attitudes to aging, while frequency of social support was not. Model of the self accounted for some variation in satisfaction with social support. Interventions to increase satisfaction with social support in later life, recognizing individual differences and attachment styles, may improve attitudes to aging, and further support health and well-being.
Abstract.
Kinsella GJ, Ames D, Storey E, Ong B, Pike KE, Saling MM, Clare L, Mullaly E, Rand E (2016). Strategies for improving memory: a randomized trial of memory groups for older people, including those with mild cognitive impairment.
J Alzheimers Dis,
49(1), 31-43.
Abstract:
Strategies for improving memory: a randomized trial of memory groups for older people, including those with mild cognitive impairment.
BACKGROUND: Governments are promoting the importance of maintaining cognitive health into older age to minimize risk of cognitive decline and dementia. Older people with amnestic mild cognitive impairment (aMCI) are particularly vulnerable to memory challenges in daily activities and are seeking ways to maintain independent living. OBJECTIVE: to evaluate the effectiveness of memory groups for improving memory strategies and memory ability of older people, especially those with aMCI. METHODS: 113 healthy older adults (HOA) and 106 adults with aMCI were randomized to a six-week memory group or a waitlist control condition. Outcome was evaluated through knowledge and use of memory strategies, memory ability (self-report and neuropsychological tests), and wellbeing. Assessments included a six-month follow-up. RESULTS: Using intention to treat analyses, there were intervention effects for HOA and aMCI groups in strategy knowledge (HOA: η2= 0.20; aMCI: η2= 0.06), strategy use (HOA: η2= 0.18; aMCI: η2= 0.08), and wellbeing (HOA: η2= 0.11; aMCI: η2= 0.05). There were also intervention effects in the HOA group, but not the aMCI group, in self-reported memory ability (η2= 0.06) and prospective memory tests (η2= 0.02). By six-month follow-up, gains were found on most HOA outcomes. In the aMCI group gains were found in strategy use, and by this stage, gains in prospective memory were also found. CONCLUSION: Memory groups can engage older people in techniques for maintaining cognitive health and improve memory performance, but more modest benefits are seen for older adults with aMCI.
Abstract.
Author URL.
Van Dijkhuizen M, Clare L, Pearce A (2016). Striving for connection.
Dementia,
5(1), 73-94.
Abstract:
Striving for connection
a number of models have been proposed to describe the processes of appraisal and coping in early-stage dementia, but possible gender differences remain to be explored. The present study focused specifically on women with early-stage Alzheimer's disease, and examined how they made sense of, and attempted to cope with, their situation. Transcripts of interviews with nine women were analysed using Interpretative Phenomenological Analysis. Ten key themes were identified, which were grouped into three higher-order themes: connectedness, protective strategies and adjustment. The women experienced memory problems as a threat to the sense of connectedness they derived from attachment to family and friends, affiliation with social roles and familiarity with their surroundings. A Level of Connectedness Model of the appraisal and coping processes of women with early-stage Alzheimer's disease is presented, which places coping in an interpersonal framework, whereby a woman's ability to maintain a sense of self is inherently dependent on the readiness of others to facilitate connectedness. This provides a focus for possible further development of psychosocial interventions that consider well-being in an interpersonal context.
Abstract.
Lee S, Ong B, Pike KE, Mullaly E, Rand E, Storey E, Ames D, Saling M, Clare L, Kinsella GJ, et al (2016). The Contribution of Prospective Memory Performance to the Neuropsychological Assessment of Mild Cognitive Impairment.
Clin Neuropsychol,
30(1), 131-149.
Abstract:
The Contribution of Prospective Memory Performance to the Neuropsychological Assessment of Mild Cognitive Impairment.
OBJECTIVE: Prospective memory difficulties are a feature of the amnestic form of mild cognitive impairment (aMCI). Although comprehensive test batteries of prospective memory are suitable for clinical practice, they are lengthy, which has detracted from their widespread clinical use. Our aim was to investigate the utility of a brief screening measure of prospective memory, which can be incorporated into a clinical neuropsychological assessment. METHODS: Seventy-seven healthy older adults (HOA) and 77 participants with aMCI were administered a neuropsychological test battery, including a prospective memory screening measure (Envelope Task), a retrospective memory measure (CVLT-II), and a multi-item subjective memory questionnaire (Prospective and Retrospective Memory Questionnaire; PRMQ) and a single-item subjective memory scale. RESULTS: Compared with HOA participants, participants with aMCI performed poorly on the Envelope Task (η(2) = .38), which provided good discrimination of the aMCI and HOA groups (AUC = .83). In the aMCI group, there was a small but significant relationship between the Envelope Task and the single-item subjective rating of memory, with the Envelope Task accounting for 5-6% of the variance in subjective memory after accounting for emotional status. This relationship of prospective memory and subjective memory was not significant for the multi-item questionnaire (PRMQ); and, retrospective memory was not a significant predictor of self-rated memory, single-item, or multi-item. CONCLUSION: a brief screening measure of prospective memory, the Envelope Task, provides useful support to traditional memory measures in detecting aMCI.
Abstract.
Author URL.
Hindle JV, Hurt CS, Burn DJ, Brown RG, Samuel M, Wilson KC, Clare L (2016). The effects of cognitive reserve and lifestyle on cognition and dementia in Parkinson's disease--a longitudinal cohort study.
Int J Geriatr Psychiatry,
31(1), 13-23.
Abstract:
The effects of cognitive reserve and lifestyle on cognition and dementia in Parkinson's disease--a longitudinal cohort study.
OBJECTIVE: Cognitive reserve theory seeks to explain the observed mismatch between the degree of brain pathology and clinical manifestations. Early-life education, midlife social and occupational activities and later-life cognitive and social interactions are associated with a more favourable cognitive trajectory in older people. Previous studies of Parkinson's disease (PD) have suggested a possible role for the effects of cognitive reserve, but further research into different proxies for cognitive reserve and longitudinal studies is required. This study examined the effects of cognitive lifestyle on cross-sectional and longitudinal measures of cognition and dementia severity in people with PD. METHODS: Baseline assessments of cognition, and of clinical, social and demographic information, were completed by 525 participants with PD. Cognitive assessments were completed by 323 participants at 4-year follow-up. Cognition was assessed using the measures of global cognition dementia severity. Cross-sectional and longitudinal serial analyses of covariance for cognition and binomial regression for dementia were performed. RESULTS: Higher educational level, socio-economic status and recent social engagement were associated with better cross-sectional global cognition. In those with normal cognition at baseline, higher educational level was associated with better global cognition after 4 years. Increasing age and low levels of a measure of recent social engagement were associated with an increased risk of dementia. CONCLUSIONS: Higher cognitive reserve has a beneficial effect on performance on cognitive tests and a limited effect on cognitive decline and dementia risk in PD.
Abstract.
Author URL.
Pratt R, Clare L, Aggarwal N (2016). The ‘Talking About Memory Coffee Group’: a new model of. support for people with early-stage dementia and their families. Dementia, 4(1), 143-148.
Olanrewaju O, Clare L, Barnes L, Brayne C (2015). A multimodal approach to dementia prevention: a report from the Cambridge Institute of Public Health.
Alzheimer's and Dementia: Translational Research and Clinical Interventions,
1(3), 151-156.
Abstract:
A multimodal approach to dementia prevention: a report from the Cambridge Institute of Public Health
Introduction Globally, dementia is the most frequent form of degenerative condition in the older adult population and poses a major health burden with high socioeconomic costs. So far, attempts to find pharmacologic interventions that can change the onset or progression of dementia have been largely unsuccessful, prompting a shift to focus on interventions aimed at modifying risk factors that occur throughout the life course. Methods the Cognitive Function and Ageing Studies, funded by the Medical Research Council, UK, convened three multidisciplinary groups of experts, expert witnesses, and advocates to discuss the state of evidence on primary, secondary, and tertiary dementia prevention and recommend future direction for intervention studies. Results Using the United Kingdom Parliamentary Select Committees' approach to gathering evidence, the primary prevention working group focused their deliberation on risk factors strongly associated with dementia. The group highlighted the need for high-quality studies to assess the effects of behavioral intervention on the delay of cognitive decline and dementia onset. Discussion the working group recommended that the development of a future dementia prevention trial should use a multimodal, multifactor, multilevel, community and individually tailored approach.
Abstract.
Toms GR, Clare L, Nixon J, Quinn C (2015). A systematic narrative review of support groups for people with dementia.
Int Psychogeriatr,
27(9), 1439-1465.
Abstract:
A systematic narrative review of support groups for people with dementia.
BACKGROUND: Provision of non-pharmacological interventions is a common policy objective for people with dementia, and support groups are an increasingly common intervention. However, there have been few attempts to synthesize evidence on the effectiveness of support groups for people with dementia. This review investigated the outcomes of support groups for people with dementia, explored participant characteristics and reviewed group formats. METHODS: a systematic review was undertaken and a narrative synthesis of data from 29 papers (reporting on 26 groups and a survey of a range of groups) was conducted. RESULTS: Support groups seem acceptable to people with dementia. Qualitative studies report subjective benefits for participants but there is limited evidence of positive outcomes based on quantitative data. Samples have tended to be homogenous and this may limit the generalizability of findings. CONCLUSIONS: Although qualitative studies will remain important in this area, further mixed-methods randomized controlled trials (RCTs)or comparison group studies with longer follow-up periods are needed to strengthen the evidence base.
Abstract.
Author URL.
Kolanowski A, Mogle J, Fick DM, Campbell N, Hill N, Mulhall P, Behrens L, Colancecco E, Boustani M, Clare L, et al (2015). Anticholinergic Exposure During Rehabilitation: Cognitive and Physical Function Outcomes in Patients with Delirium Superimposed on Dementia.
Am J Geriatr Psychiatry,
23(12), 1250-1258.
Abstract:
Anticholinergic Exposure During Rehabilitation: Cognitive and Physical Function Outcomes in Patients with Delirium Superimposed on Dementia.
OBJECTIVES: We examined the association between anticholinergic medication exposure and subsequent cognitive and physical function in patients with delirium superimposed on dementia during rehabilitation. We also examined length of stay and discharge disposition by anticholinergic medication exposure. DESIGN: in this secondary analysis we used control group data from an ongoing randomized clinical trial. SETTING/PARTICIPANTS: Participants with delirium and dementia were enrolled at admission to post-acute care. These 99 participants had a mean age of 86.11 (±6.83) years; 67.6% were women; 98% were Caucasian; and 33% were positive for at least one APOE e4 allele. MEASURES: We obtained daily measures of cognitive and physical function using: Digit Span; memory, orientation and attention items from the Montreal Cognitive Assessment; CLOX; the Confusion Assessment Method; and the Barthel Index. Anticholinergic medication exposure was measured weekly using the Anticholinergic Cognitive Burden Scale. RESULTS: Using multilevel models for time we found that greater use of clinically relevant anticholinergic medications in the previous week reduced cognitive and physical function, as measured by Digit Span Backwards and the Barthel index, in the current week. There was no effect of anticholinergic medication use on delirium severity, and APOE status did not moderate any outcomes. Greater use of clinically relevant anticholinergic medications was related to longer length of stay but not discharge disposition. CONCLUSIONS: for vulnerable older adults, anticholinergic exposure represents a potentially modifiable risk factor for poor attention, working memory, physical function, and greater length of stay during rehabilitation.
Abstract.
Author URL.
Zwijsen S, Clare L, Gerridzen I, Veenhuizen R (2015). Awareness and challenging behaviour in neurodegenerative diseases: Different perspectives.
INTERNATIONAL PSYCHOGERIATRICS,
27, S169-S169.
Author URL.
Clare L (2015). Awareness in people with early-stage dementia: Implications for capacity.
INTERNATIONAL PSYCHOGERIATRICS,
27, S184-S185.
Author URL.
Morris RG, Nelis SM, Martyr A, Markova I, Roth I, Woods RT, Whitaker CJ, Clare L (2015). Awareness of memory task impairment versus everyday memory difficulties in dementia.
Journal of NeuropsychologyAbstract:
Awareness of memory task impairment versus everyday memory difficulties in dementia
© 2014 the British Psychological Society. The study investigated different types of awareness of memory dysfunction in dementia, specifically judgements concerning memory task performance or appraisal of everyday memory functioning and also exploring the neuropsychological correlates of such awareness. This was investigated in 76 people with dementia, comprising 46 patients with Alzheimer's disease (AD) and 30 patients with vascular dementia (VaD). The Memory Awareness Rating Scale (Clare et al. 2002, Neuropsychol Rehabil, 12, 341-362) was used, which includes an Objective-Judgement Discrepancy (OJD) technique involving comparison of subjective evaluation of performance on specific memory tasks with actual performance, and a Subjective Rating Discrepancy (SRD) technique, which compares self versus informant judgement of everyday memory function. The AD and VaD groups showed lower awareness than a normal control group for both types of measures, the AD group showing less awareness than the VaD group on the OJD measure. Regression analyses supported associations for both groups between memory impairment and the OJD measure and between naming impairment and the SRD measure. The findings are discussed in terms of neurocognitive theories accounting for loss of awareness in dementia.
Abstract.
Morris RG, Martyr A, Nelis S, Markova IS, Roth I, Woods RT, Clare L (2015). BEING LESS AWARE OF FUNCTIONAL DECLINE MAY PRESERVE EMOTIONAL WELL-BEING IN PEOPLE WITH DEMENTIA.
GERONTOLOGIST,
55, 593-593.
Author URL.
Quinn C, Clare L, Woods RT (2015). Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia.
Dementia (London),
14(2), 220-237.
Abstract:
Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia.
This paper investigates how meaning, motivation and relationship dynamics influence the caregivers' subjective experience of caregiving. We interviewed 12 family caregivers of relatives with dementia. We analysed transcripts of these interviews using interpretative phenomenological analysis. Six key themes emerged from the analysis, which were encompassed under an overarching theme of 'balancing needs'. This describes the caregivers' constant struggle to balance their own needs against those of their relative, which created a series of dilemmas. These dilemmas emerged from the desire to try to preserve the caregivers' relationship with their relative, while recognising that this relationship was changing. The caregivers' relationship with their relative influenced the caregivers' motivations to provide care and gave caregiving meaning. Although caregivers were motivated to provide care the battle to balance needs meant that the caregivers recognised there might come a time when they may need to cease caregiving.
Abstract.
Author URL.
Jones IR, Victor C, Clare L (2015). CAPITALS, ASSETS AND RESOURCES: a FRAMEWORK FOR UNDERSTANDING THE LIVED EXPERIENCE OF DEMENTIA.
GERONTOLOGIST,
55, 593-594.
Author URL.
Zwijsen S, Clare L, Gerridzen I, Veenhuizen R (2015). Challenging behaviour and the biopsychosocial model: is there something missing?.
INTERNATIONAL PSYCHOGERIATRICS,
27, S169-S170.
Author URL.
Hindle JV, Martin-Forbes PA, Bastable AJM, Pye KL, Martyr A, Whitaker CJ, Craik FIM, Bialystok E, Thomas EM, Mueller Gathercole VC, et al (2015). Cognitive reserve in Parkinson's disease: the effects of welsh-english bilingualism on executive function.
Parkinsons Dis,
2015Abstract:
Cognitive reserve in Parkinson's disease: the effects of welsh-english bilingualism on executive function.
Objective. Bilingualism has been shown to benefit executive function (EF) and delay the onset of Alzheimer's disease. This study aims at examining whether a bilingual advantage applies to EF in Parkinson's disease (PD). Method. In a cross-sectional outpatient cohort of monolingual English (n = 57) and bilingual Welsh/English (n = 46) speakers with PD we evaluated the effects of bilingualism compared with monolingualism on performance on EF tasks. In bilinguals we also assessed the effects of the degree of daily usage of each language and the degree of bilingualism. Results. Monolinguals showed an advantage in performance of language tests. There were no differences in performance of EF tests in monolinguals and bilinguals. Those who used Welsh less in daily life had better performance on one test of English vocabulary. The degree of bilingualism correlated with one test of nonverbal reasoning and one of working memory but with no other tests of EF. Discussion. The reasons why the expected benefit in EF in Welsh-English bilinguals with PD was not found require further study. Future studies in PD should include other language pairs, analysis of the effects of the degree of bilingualism, and longitudinal analysis of cognitive decline or dementia together with structural or functional neuroimaging.
Abstract.
Author URL.
Orgeta V, Mcdonald KR, Poliakoff E, Hindle JV, Clare L, Leroi I (2015). Cognitive training interventions for dementia and mild cognitive impairment in Parkinson's Disease.
Cochrane Database of Systematic Reviews,
2015(11).
Abstract:
Cognitive training interventions for dementia and mild cognitive impairment in Parkinson's Disease
This is the protocol for a review and there is no abstract. The objectives are as follows: Primary objective: to determine whether cognitive training improves cognition in people with Parkinson's disease dementia and Parkinson's disease with mild cognitive impairment or other clearly defined forms of cognitive impairment in Parkinson's disease. Secondary objectives: to determine the effect of cognitive training on quality of life, performance of activities of daily living, psychiatric symptoms, adverse events, and caregiver quality of life and burden.
Abstract.
Jones CL, Tudor Edwards R, nelis SM, Jones IR, Hindle JV, Thom JT, Cooney J, Clare L (2015). Cost-Effectiveness Findings from the Agewell Pilot Study of Behaviour Change to Promote Health and Wellbeing in Later Life.
Health Economics & Outcome Research,
1(1).
Abstract:
Cost-Effectiveness Findings from the Agewell Pilot Study of Behaviour Change to Promote Health and Wellbeing in Later Life.
ackground:
Participation in cognitive and physical activities may help to maintain health and wellbeing in older
people. The Agewell study explored the feasibility of increasing cognitive and physical activity in older people through a
goal-setting approach. This paper describes the findings of the cost-effectiveness analysis.
Method:
Individuals over the age of 50 and attending an Agewell centre in North Wales were randomised to one of
three conditions: control (IC), goal-setting (GS), or goal-setting with mentoring (GM). We undertook a cost-effectiveness
analysis comparing GS vs. IC, GM vs. IC and GM vs. GS. The primary outcome measure for this analysis was the QALY,
calculated using the EQ-5D. Participants’ health and social care contacts were recorded and costed using national unit
costs.
Results:
Seventy participants were followed-up at 12 months. Intervention set up and delivery costs were £252 per
participant in the GS arm and £269 per participant in the GM arm. Mean health and social care costs over 12 months
were £1,240 (s.d. £3,496) per participant in the IC arm, £1,259 (s.d. £3,826) per participant in the GS arm and £1,164
(s.d. £2,312) per participant in the GM arm. At a willingness to pay threshold of £20,000 per QALY there was a 65%
probability that GS was cost-effective compared to IC (ICER of £1,070). However, there was only a 41% probability that
GM was cost-effective compared to IC (ICER of £2,830) at a threshold of £20,000 per QALY.
Conclusion:
Setting up and running the community based intervention was feasible. Due to the small sample size
it is not possible to draw a firm conclusion about cost-effectiveness; however, our preliminary results suggest that goal-
setting is likely to be cost-effective compared to the control condition of no goal-setting, the addition of mentoring was
effective but not cost-effective.
Abstract.
Opdebeeck C, Quinn C, Nelis SM, Clare L (2015). Does cognitive reserve moderate the association between mood and cognition? a systematic review.
Reviews in Clinical Gerontology,
25(03), 181-193.
Abstract:
Does cognitive reserve moderate the association between mood and cognition? a systematic review
The evidence regarding the association between mood and cognitive function is conflicting, suggesting the involvement of moderating factors. This systematic review aimed to assess whether cognitive reserve moderates the association between mood and cognition in older people. Cognitive reserve was considered in terms of the three key proxy measures – educational level, occupation, and engagement in cognitively-stimulating leisure activities – individually and in combination. Sixteen studies representing 37,101 participants were included in the review. of these, 13 used a measure of education, one used a measure of occupation, two used a measure of participation in cognitively-stimulating activities, and one used a combination of these. In general, cognitive reserve moderated the association between mood and cognition, with a larger negative association between mood and cognition in those with low cognitive reserve than in those with high cognitive reserve. Further research utilising multiple proxy measures of cognitive reserve is required to elucidate the associations.
Abstract.
Toms GR, Quinn C, Anderson DE, Clare L (2015). Help yourself: perspectives on self-management from people with dementia and their caregivers.
Qual Health Res,
25(1), 87-98.
Abstract:
Help yourself: perspectives on self-management from people with dementia and their caregivers.
Self-management interventions are increasingly offered to people with chronic health conditions. However, there has been limited exploration of how applicable such an approach is in early stage dementia. In this study we explored the views of people with dementia and family caregivers on the use of self-management in dementia. We conducted semistructured interviews with 13 people with early stage dementia and 11 caregivers. We analyzed transcripts using thematic analysis. We found eight themes in the analysis, and they indicated that self-management occurs in the context of peoples' family and social relationships as well as relationships with professional services. Six of the themes involved barriers to and facilitators of self-management. It is evident from these findings that people with dementia and caregivers use self-management techniques. Their use of such techniques could be enhanced by the development of interventions designed to help people with dementia to develop their self-management skills.
Abstract.
Author URL.
Opdebeeck C, Nelis SM, Quinn C, Clare L (2015). How does cognitive reserve impact on the relationships between mood, rumination, and cognitive function in later life?.
Aging Ment Health,
19(8), 705-712.
Abstract:
How does cognitive reserve impact on the relationships between mood, rumination, and cognitive function in later life?
OBJECTIVES: Higher levels of cognitive reserve (CR) are associated with better cognitive function in later life. In contrast, depressive symptoms, anxiety, and rumination are associated with diminished cognitive function. There has been limited research to date examining the influence of CR on the relationship between mood and cognitive function, and results are inconsistent. The aim of this study was to investigate the role CR plays in the relationships between mood, rumination, and cognitive function in later life. METHOD: Two hundred and thirty-six healthy people aged 60+ completed measures of CR, depression, anxiety, rumination, recall, and verbal fluency. Participants were dichotomised at the median into those with lower and higher levels of CR. RESULTS: CR, mood, and rumination together accounted for between 13% and 15.6% of the variance in scores on the cognitive tasks in the sample as a whole. Mood and rumination explained a significant amount of variance in cognitive test scores in those with lower levels of CR, but not in those with higher levels of CR. CONCLUSION: the way in which mood and rumination are related to cognitive function differs depending on the individual's level of CR. These results support the view that it is important to continue to build on CR as people move into later life in order to maintain cognitive health.
Abstract.
Author URL.
Opdebeeck C, Quinn C, Nelis SM, Clare L (2015). Is cognitive lifestyle associated with depressive thoughts and self-reported depressive.
European Journal of Ageing,
13(1), 63-73.
Abstract:
Is cognitive lifestyle associated with depressive thoughts and self-reported depressive
Key components of cognitive lifestyle are educational attainment, occupational complexity and engagement in cognitively stimulating leisure activities. Each of these factors is associated with experiencing fewer depressive symptoms in later life, but no study to date has examined the relationship between overall cognitive lifestyle and depressive symptoms. This task is made more complex because relatively few older participants in cross-sectional studies will be currently experiencing depression. However, many more will show evidence of a depressive thinking style that predisposes them towards depression. This study aimed to investigate the extent to which cognitive lifestyle and its individual components are associated with depressive thoughts and symptoms. Two hundred and six community-dwelling participants aged 65+ completed the depressive cognitions scale, the geriatric depression scale and the lifetime of experiences questionnaire, which assesses cognitive lifestyle. Correlational analysis indicated that each of the individual lifestyle factors—education, occupational complexity and activities in young adulthood, mid-life and later life—and the combined cognitive lifestyle score was positively associated with each other and negatively with depressive symptoms, while all except education were negatively associated with depressive thoughts. Depressive thoughts and symptoms were strongly correlated. Cognitive lifestyle score explained 4.6 % of the variance in depressive thoughts and 10.2 % of the variance in depressive symptoms. The association of greater participation in cognitive activities, especially in later life, with fewer depressive symptoms and thoughts suggests that preventive interventions aimed at increasing participation in cognitively stimulating leisure activity could be beneficial in decreasing the risk of experiencing depressive thoughts and symptoms in later life.
Abstract.
Yates JA, Clare L, Woods RT, Matthews FE (2015). Subjective Memory Complaints are Involved in the Relationship between Mood and Mild Cognitive Impairment.
Journal of Alzheimer's Disease,
48(S1), S115-S123.
Abstract:
Subjective Memory Complaints are Involved in the Relationship between Mood and Mild Cognitive Impairment
Subjective memory complaints (SMC) are a criterion in many definitions of mild cognitive impairment (MCI). However, there is controversy over whether this is useful and appropriate, as previous research has suggested that SMC may be a function of mood problems such as anxiety and depression. This paper aimed to establish the relationship between MCI and mood in older people and to investigate the role that SMC play in the relationship. Structured interviews were conducted with community dwelling older people in Wales to collect information regarding cognitive functioning, mood, and well-being. A widely-used algorithm was used to categorize 3,173 participants into three groups: not cognitively impaired, MCI including SMC (MCI), and MCI without SMC (MCIW). The odds of experiencing anxiety or depression were calculated for each cognitive group. Participants with MCI had increased odds of experiencing symptoms of both anxiety and depression, but the odds were not changed for participants in the not cognitively impaired or MCIW categories. A mediation analysis was performed on the whole sample using cognition as a dichotomous variable, grouped using an age-, education-, and gender-adjusted median cut off point. This showed that SMC partially mediated the relationship between anxiety and cognition, and depression and cognition. Mood problems may be related to SMC rather than objective cognitive impairment, as only participants with MCI that included SMC showed increased odds of experiencing anxiety and depression. SMC are likely to play a mediating role in the relationship between mood and cognitive functioning.
Abstract.
Clare L, Nelis SM, Jones IR, Hindle JV, Thom JM, Nixon JA, Cooney J, Jones CL, Tudor Edwards R, Whitaker CJ, et al (2015). The Agewell trial: a pilot randomised controlled trial of a behaviour change intervention to promote healthy ageing and reduce risk of dementia in later life.
BMC Psychiatry,
15Abstract:
The Agewell trial: a pilot randomised controlled trial of a behaviour change intervention to promote healthy ageing and reduce risk of dementia in later life.
BACKGROUND: Lifestyle factors represent prime targets for behaviour change interventions to promote healthy ageing and reduce dementia risk. We evaluated a goal-setting intervention aimed at promoting increased cognitive and physical activity and improving mental and physical fitness, diet and health. METHODS: This was a pilot randomised controlled trial designed to guide planning for a larger-scale investigation, provide preliminary evidence regarding efficacy, and explore feasibility and acceptability. Primary outcomes were engagement in physical and cognitive activity. Participants aged over 50 living independently in the community were recruited through a community Agewell Centre. Following baseline assessment participants were randomly allocated to one of three conditions: control (IC) had an interview in which information about activities and health was discussed; goal-setting (GS n = 24) had an interview in which they set behaviour change goals relating to physical, cognitive and social activity, health and nutrition; and goal-setting with mentoring (GM, n = 24) had the goal-setting interview followed by bi-monthly telephone mentoring. Participants and researchers were blinded to group assignment. Participants were reassessed after 12 months. RESULTS: Seventy-five participants were randomised (IC n = 27, GS n = 24, GM n = 24). At 12-month follow-up, the two goal-setting groups, taken together (GS n = 21, GM n = 22), increased their level of physical (effect size 0.37) and cognitive (effect size 0.15) activity relative to controls (IC n = 27). In secondary outcomes, the two goal-setting groups taken together achieved additional benefits compared to control (effect sizes ≥ 0.2) in memory, executive function, cholesterol level, aerobic capacity, flexibility, balance, grip strength, and agility. Adding follow-up mentoring produced further benefits compared to goal-setting alone (effect sizes ≥ 0.2) in physical activity, body composition, global cognition and memory, but not in other domains. Implementation of the recruitment procedure, assessment and intervention was found to be feasible and the approach taken was acceptable to participants, with no adverse effects. CONCLUSIONS: a brief, low-cost goal-setting intervention is feasible and acceptable, and has the potential to achieve increased activity engagement. TRIAL REGISTRATION: Current Controlled Trials ISRCTN30080637.
Abstract.
Author URL.
Clare L, Nelis SM, Jones IR, Hindle JV, Thom JM, Nixon JA, Cooney J, Jones CL, Tudor Edwards R, Whitaker CJ, et al (2015). The Agewell trial: a pilot randomised controlled trial of a behaviour change intervention to promote healthy ageing and reduce risk of dementia in later life.
BMC Psychiatry,
15(1).
Abstract:
The Agewell trial: a pilot randomised controlled trial of a behaviour change intervention to promote healthy ageing and reduce risk of dementia in later life.
Lifestyle factors represent prime targets for behaviour change interventions to promote healthy ageing and reduce dementia risk. We evaluated a goal-setting intervention aimed at promoting increased cognitive and physical activity and improving mental and physical fitness, diet and health.
Abstract.
Author URL.
Vidovich MR, Lautenschlager NT, Flicker L, Clare L, McCaul K, Almeida OP (2015). The PACE study: a randomized clinical trial of cognitive activity strategy training for older people with mild cognitive impairment.
American Journal of Geriatric Psychiatry,
23(4), 360-372.
Abstract:
The PACE study: a randomized clinical trial of cognitive activity strategy training for older people with mild cognitive impairment
Objective the role of cognition-focused interventions in reducing cognitive decline in older people remains uncertain. This study aimed to clarify whether a group cognitive activity (CA) strategy-training program would decrease the 2-year rate of cognitive decline of people with mild cognitive impairment (MCI). Design Randomized controlled trial. Setting One study site. Participants 160 older adults with MCI ≥ 65 years of age (mean: 75, SD: 5.8). Intervention Five-week CA strategy training or a control nonspecific educational program. The primary outcome measure was change from baseline in the total score on the Cambridge Cognitive Examination-Revised (CAMCOG-R). Secondary outcomes of interest included changes in memory, attention, executive functions, mood, and quality of life. Endpoints were collected 10, 52, and 104 weeks post baseline. Results Intention to treat analysis identified no significant difference in CAMCOG-R scores over time between the two groups (mean difference: -0.36, 95% CI: -1.02,0.29) or across secondary outcome measures. The exceptions were better performance of the CA group on immediate attention (Digit Span Forwards, adjusted mean difference: 0.15, 95% CI: 0.01,0.30) and better quality of life (adjusted mean difference: 0.57, 95% CI: 0.10,1.04) compared with controls. Conclusion the devised program of CA did not improve general cognitive performance of older adults with MCI over a period of 2 years. Although favorable, the beneficial effects of the intervention on attention and quality of life were small, and of uncertain significance.
Abstract.
Vidovich MR, Lautenschlager NT, Flicker L, Clare L, McCaul K, Almeida OP (2015). The PACE study: a randomized clinical trial of cognitive activity strategy training for older people with mild cognitive impairment.
Am J Geriatr Psychiatry,
23(4), 360-372.
Abstract:
The PACE study: a randomized clinical trial of cognitive activity strategy training for older people with mild cognitive impairment.
OBJECTIVE: the role of cognition-focused interventions in reducing cognitive decline in older people remains uncertain. This study aimed to clarify whether a group cognitive activity (CA) strategy-training program would decrease the 2-year rate of cognitive decline of people with mild cognitive impairment (MCI). DESIGN: Randomized controlled trial. SETTING: One study site. PARTICIPANTS: 160 older adults with MCI ≥65 years of age (mean: 75, SD: 5.8). INTERVENTION: Five-week CA strategy training or a control nonspecific educational program. The primary outcome measure was change from baseline in the total score on the Cambridge Cognitive Examination-Revised (CAMCOG-R). Secondary outcomes of interest included changes in memory, attention, executive functions, mood, and quality of life. Endpoints were collected 10, 52, and 104 weeks post baseline. RESULTS: Intention to treat analysis identified no significant difference in CAMCOG-R scores over time between the two groups (mean difference: -0.36, 95% CI: -1.02,0.29) or across secondary outcome measures. The exceptions were better performance of the CA group on immediate attention (Digit Span Forwards, adjusted mean difference: 0.15, 95% CI: 0.01,0.30) and better quality of life (adjusted mean difference: 0.57, 95% CI: 0.10,1.04) compared with controls. CONCLUSION: the devised program of CA did not improve general cognitive performance of older adults with MCI over a period of 2 years. Although favorable, the beneficial effects of the intervention on attention and quality of life were small, and of uncertain significance.
Abstract.
Author URL.
Clare L, Nellis S, Woods RT, Jones IR (2015). UNDERSTANDING AND ADJUSTING TO DEMENTIA: IMPLICATIONS FOR HOW WE TALK WITH PEOPLE ABOUT THE CONDITION.
GERONTOLOGIST,
55, 593-593.
Author URL.
Quinn C, Clare L, Jelley H, Bruce E, Woods B (2014). 'It's in the eyes': how family members and care staff understand awareness in people with severe dementia.
Aging Ment Health,
18(2), 260-268.
Abstract:
'It's in the eyes': how family members and care staff understand awareness in people with severe dementia.
OBJECTIVES: in this study, we explored how family members and care staff understand awareness in people with severe dementia and what this awareness means to them. METHOD: We conducted four focus groups between 2007 and 2009 in the UK with 11 family members and 12 care staff. Transcripts of the focus groups were analysed using thematic analysis. RESULTS: a model of awareness emerged in which the perceived level of awareness in the person with dementia was influenced by an interaction between attributes of the person with dementia and the environment, with expressions of awareness being hindered by environmental factors and facilitated through appropriate stimulation. Awareness did fluctuate, and differences in interpretations of awareness were linked to the meaning assigned to particular kinds of responses. For family members, awareness was intrinsically linked to their emotional connection with the person with dementia. For care staff, identifying signs of awareness helped them to do their job and enabled them to feel that they had connected with the person with dementia. CONCLUSION: the findings of this study suggest that care staff would benefit from training both on identifying awareness and on providing suitable activities for people with severe dementia. Care staff and family members would also benefit from greater sharing of information about the person with dementia. This could help to enhance quality of life for person with dementia and improve quality of care.
Abstract.
Author URL.
Nelis SM, Clare L, Whitaker CJ (2014). Attachment in people with dementia and their caregivers: a systematic review.
Dementia (London),
13(6), 747-767.
Abstract:
Attachment in people with dementia and their caregivers: a systematic review.
Attachment bonds are important for personality development, emotion regulation and mental health throughout the lifespan. This systematic review explores the relevance of attachment for people with dementia, and how attachment influences the experience of caregivers of people with dementia. Eighteen studies were included. Three focused on attachment in terms of parent fixation in dementia, three examined attachment behaviour in dementia, five addressed attachment and dementia-related behavioural problems, and seven concentrated on attachment in caregivers. Attachment behaviours were evident at various stages of dementia and the presence of parent fixation was observed when attachment needs were not being met. Insecure attachment was related to neuropsychiatric symptoms. Attachment security had important consequences for caregiver psychological health. Implications of methodological issues such as the choice of respondent, measurement issues, and the lack of a longitudinal perspective are discussed. The implications of attachment for the support of people with dementia and caregivers are considered.
Abstract.
Author URL.
Clare L, Quinn C, Hoare Z, Whitaker R, Woods RT (2014). Care staff and family member perspectives on quality of life in people with very severe dementia in long-term care: a cross-sectional study.
HEALTH AND QUALITY OF LIFE OUTCOMES,
12 Author URL.
Hindle JV, Martyr A, Clare L (2014). Cognitive reserve in Parkinson's disease: a systematic review and meta-analysis.
Parkinsonism Relat Disord,
20(1), 1-7.
Abstract:
Cognitive reserve in Parkinson's disease: a systematic review and meta-analysis.
BACKGROUND: the concept of cognitive reserve is proposed to explain the mismatch between the degree of pathological changes and their clinical manifestations and has been used to help understand the variation in the rate of cognitive decline and the development of dementias. It is not clear whether this concept applies to cognitive performance, cognitive decline and dementia in Parkinson's disease (PD). METHODS: a systematic review was conducted using the most commonly described proxies for cognitive reserve of education, occupation and leisure activities. Thirty four papers were found on education and cognition in PD but there were no studies of the other proxies of reserve. A random effects meta-analysis was used to assess the associations between education and cross-sectional cognitive assessments, longitudinal global cognitive decline and a long term dementia diagnosis. RESULTS: There was a significant association between higher education and cross-sectional performance of MMSE, global cognition, mild cognitive impairment, attention, executive function, visuospatial function and memory. There was a small but significant association between higher education and a reduced rate of cognitive decline. There was no association with a final dementia diagnosis. There was not enough information to perform an analysis on the rate and timing of transition to dementia. CONCLUSIONS: Higher levels of education are associated with significantly better cognitive performance and a small but significant slowing in cognitive decline but are not associated with a reduction in long-term dementia in PD. More detailed, standardized, longitudinal studies are required to study conclusively the effects cognitive reserve in PD.
Abstract.
Author URL.
Kolanowski AM, Hill NL, Kurum E, Fick DM, Yevchak AM, Mulhall P, Clare L, Valenzuela M (2014). Gender differences in factors associated with delirium severity in older adults with dementia.
Arch Psychiatr Nurs,
28(3), 187-192.
Abstract:
Gender differences in factors associated with delirium severity in older adults with dementia.
The purpose of this descriptive correlational study was to explore potential gender differences in the relationship of dementia severity, age, APOE status, cognitive reserve and co-morbidity (two potentially modifiable factors), to delirium severity in older adults. Baseline data from an ongoing clinical trial and a Poisson regression procedure were used in the analyses. Participants were 148 elderly individuals with dementia and delirium admitted to post-acute care. In women, delirium severity was related to dementia severity (p=0.002) and co-morbidity moderated that effect (p=0.03). In men, education was marginally associated with delirium severity (p=0.06). Implications for research are discussed.
Abstract.
Author URL.
Clare L, Nelis SM, Quinn C, Martyr A, Henderson C, Hindle JV, Jones IR, Jones RW, Knapp M, Kopelman MD, et al (2014). Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study.
HEALTH AND QUALITY OF LIFE OUTCOMES,
12 Author URL.
Martyr A, Clare L (2014). P1‐175: AWARENESS OF FUNCTIONAL ABILITY IN PEOPLE WITH DEMENTIA: DIAGNOSTIC ACCURACY AND CLINICAL IMPLICATIONS. Alzheimer's & Dementia, 10(4S_Part_9).
Martyr A, Hindle JV, Whitaker CJ, Craik FIM, Bialystok E, Martin‐Forbes PA, Bastable AJM, Pye KL, Quinn C, Thomas EM, et al (2014). P2‐296: BILINGUALISM, EXECUTIVE CONTROL, AND COGNITIVE RESERVE: IMPLICATIONS FOR PREVENTION OF ALZHEIMER'S DISEASE. Alzheimer's & Dementia, 10(4S_Part_15).
Opdebeeck C, Martyr A, Clare L (2014). P3‐335: COGNITIVE RESERVE AND COGNITIVE FUNCTION: a META‐ANALYSIS. Alzheimer's & Dementia, 10(4S_Part_20).
Marková IS, Clare L, Whitaker CJ, Roth I, Nelis SM, Martyr A, Roberts JL, Woods RT, Morris R (2014). Phenomena of awareness in dementia: heterogeneity and its implications.
Conscious Cogn,
25, 17-26.
Abstract:
Phenomena of awareness in dementia: heterogeneity and its implications.
Despite much research on the relationship between awareness and dementia little can be concluded concerning their relationship and the role of other factors. It is likely that studies capture different phenomena of awareness. This study aimed at identifying and delineating such variation by analysing data from three questionnaires obtained during the longitudinal study of awareness in 101 people with early-stage dementia. The data concerned awareness in relation to memory, activities of daily living and socio-emotional function. Significant differences in patterns of discrepancies were obtained. This suggests that the awareness phenomena involved were structurally different; and that, in turn, this may reflect variation in the intrinsic linking between awareness and its 'object' (different 'objects' determining different kinds of judgements). The identification of such differences is necessary so that appropriate methodologies can be applied to the study of awareness in different contexts.
Abstract.
Author URL.
Martyr A, Nelis SM, Clare L (2014). Predictors of perceived functional ability in early-stage dementia: self-ratings, informant ratings and discrepancy scores.
Int J Geriatr Psychiatry,
29(8), 852-862.
Abstract:
Predictors of perceived functional ability in early-stage dementia: self-ratings, informant ratings and discrepancy scores.
OBJECTIVE: Assessing functional ability is an important element in diagnosing and monitoring the progression of dementia, with research suggesting a link between functional ability and cognition. We investigated the predictors of total score and individual item functional ratings made by people with dementia (PwD), carers of PwD and the resulting discrepancy score. METHODS: People with early-stage Alzheimer's disease, vascular or mixed dementia (n = 100) and their carers completed the Functional Activities Questionnaire. PwD also completed tests of memory, verbal executive function, language and cognitive screening, and provided ratings of mood. Carers provided a rating of stress. RESULTS: Immediate memory predicted self-rated functioning, whereas carer stress predicted informant-rated functioning. Letter fluency predicted the discrepancy between self-rated and informant-rated functioning. For self-rated functioning, the direction and pattern of the individual item predictors suggested a degree of functional awareness. Informant ratings were dominated by carer stress and, to a lesser extent, everyday memory. The discrepancy scores were also predicted by carer stress and everyday memory, but also letter fluency. CONCLUSIONS: Self-rated functioning showed evidence of awareness based on the direction and pattern of significant individual item predictors. Informant ratings, however, were found to be significantly influenced by carer stress. The findings have implications for the use of perceived functional ratings in clinical and research settings.
Abstract.
Author URL.
Kudlicka A, Clare L, Hindle JV (2014). Quality of life, health status and caregiver burden in Parkinson's disease: relationship to executive functioning.
Int J Geriatr Psychiatry,
29(1), 68-76.
Abstract:
Quality of life, health status and caregiver burden in Parkinson's disease: relationship to executive functioning.
OBJECTIVE: High-quality person-centred care for people with Parkinson's disease (PwPD) and their families relies on identifying and addressing factors that specifically impact on quality of life (QoL). Deficits in executive functions (EF) are common in Parkinson's disease, but their impact on PwPD and their caregivers is not well understood. The present study evaluated how EF contributes to QoL and health status for the PwPD and caregiver burden. METHODS: Sixty-five PwPD completed measures of QoL, health status and EF, and 50 caregivers rated the EF of the PwPD and their own burden. Multiple regression analyses examined predictors of QoL (general life, health and movement disorders domains), health status and caregiver burden. RESULTS: Quality of life in the health and movement disorders domains was best explained by caregiver-rated EF, whereas QoL in the general life domain was best explained by level of depression. Health status was predicted by self-rated EF, with an objective EF measure also included in the regression model. Caregiver burden was best explained by caregiver-rated EF and disease severity, with general cognition and other factors also included in the regression model. CONCLUSIONS: Executive functions-related behavioural problems may contribute to QoL and health status in PwPD and affect caregiver burden. The findings support the view that the concepts of subjective QoL and self-assessed health status are only partially related and should not be seen as identical. Adequate strategies to reduce the impact of EF deficits are needed as this may have the potential to improve QoL in PwPD.
Abstract.
Author URL.
Quinn C, Anderson D, Toms G, Whitaker R, Edwards RT, Jones C, Clare L (2014). Self-management in early-stage dementia: a pilot randomised controlled trial of the efficacy and cost-effectiveness of a self-management group intervention (the SMART study).
Trials,
15Abstract:
Self-management in early-stage dementia: a pilot randomised controlled trial of the efficacy and cost-effectiveness of a self-management group intervention (the SMART study).
BACKGROUND: the possibility of living well with a long-term condition has been identified as centrally relevant to the needs of people living with dementia. Growing numbers of people with early-stage dementia are contributing accounts that emphasise the benefits of actively engaging in managing the condition. Self-management interventions share the common objectives of educating about the condition, optimising well-being, enhancing control over the situation and enabling people to take more responsibility for managing the condition. Benefits of such an approach can include improved knowledge, self-efficacy, health status, and better performance of self-management behaviours. However, there is only preliminary evidence that people with early-stage dementia can benefit from such interventions. METHODS: This feasibility study involves the development of a self-management group intervention for people with early-stage Alzheimer's disease, vascular dementia or mixed Alzheimer's and vascular dementia. This study is a single-site pilot randomised-controlled trial. Forty-two people with early stage dementia, each with a caregiver (family member/friend), will be randomised to either the self-management group intervention or to treatment as usual.The self-management group intervention will involve eight weekly sessions, each lasting 90 minutes, held at a memory clinic in North Wales. All participants will be re-assessed three and six months post-randomisation. This study is intended to supply an early evaluation of the self-management intervention so that a full scale trial may be powered from the best available evidence. It will assess the feasibility of the intervention, the study design and the recruitment strategies. It will estimate the parameters and confidence intervals for the research questions of interest. The primary outcome of interest is the self-efficacy score of the person with dementia at three months post-randomisation. Secondary outcomes for the person with dementia are self-efficacy at six months post-randomisation and cognitive ability, mood and well-being at three and six months post-randomisation. Secondary outcomes for caregivers are their distress and stress at three and six months post-randomisation. The cost-effectiveness of the intervention will also be examined. DISCUSSION: This study will provide preliminary information about the feasibility, efficacy and cost-effectiveness of a self-management group intervention for people in the early stages of dementia. TRIAL REGISTRATION: Current Controlled Trials, ISRCTN02023181.
Abstract.
Author URL.
Clare L, Woods RT, Nelis SM, Martyr A, Marková IS, Roth I, Whitaker CJ, Morris RG (2014). Trajectories of quality of life in early-stage dementia: individual variations and predictors of change.
Int J Geriatr Psychiatry,
29(6), 616-623.
Abstract:
Trajectories of quality of life in early-stage dementia: individual variations and predictors of change.
BACKGROUND: Little evidence is available about how quality of life (QoL) changes as dementia progresses. OBJECTIVES: We explored QoL trajectories over a 20-month period and examined what predicted change in QoL. METHOD: Fifty-one individuals with a diagnosis of Alzheimer's, vascular or mixed dementia (people with dementia (PwD)) participating in the Memory Impairment and Dementia Awareness Study rated their QoL using the QoL-Alzheimer's Disease Scale at baseline and at 20-month follow-up. PwD also rated their mood and quality of relationship with the carer. In each case, the carer rated his or her level of stress and perceived quality of relationship with the PwD. RESULTS: There was no change in mean QoL score. Nearly one-third of PwD rated QoL more positively at 20-month follow-up and nearly one-third rated QoL more negatively. These changes could be regarded as reliable in one-quarter of the sample. Participants taking acetylcholinesterase-inhibiting medication at baseline were more likely to show a decline in QoL score. There were no other significant differences between those whose scores increased, decreased or stayed the same on any demographic or disease-related variables, or in mood or perceived quality of relationship with the carer. Whereas baseline QoL score was the strongest predictor of QoL at 20 months, the quality of relationship with the carer as perceived by the PwD was also independently a significant predictor. CONCLUSIONS: There is a degree of individual variation in QoL trajectories. Use of acetylcholinesterase-inhibiting medication appears linked to decline in QoL score, whereas positive relationships with carers play an important role in maintaining QoL in early-stage dementia.
Abstract.
Author URL.
Woods RT, Nelis SM, Martyr A, Roberts J, Whitaker CJ, Markova I, Roth I, Morris R, Clare L (2014). What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: a cross-sectional study.
Health Qual Life Outcomes,
12Abstract:
What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: a cross-sectional study.
BACKGROUND: Self-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions. Depressed mood, relationship quality and neuropsychiatric symptoms predict scores on these measures, whereas cognitive impairment and functional abilities typically do not. This study examines whether these self-reports are influenced by personality and by the person's awareness of his/her impairments. A strong negative association between QoL and awareness of deficits would have implications for the validity of self-report in this context and for therapeutic interventions aiming to increase adjustment and coping. METHODS: Participants were 101 individuals with early‒stage dementia and their family carers participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. QoL was assessed using the QoL-AD scale, and awareness was assessed in relation to memory, activities of daily living and social functioning. Self-concept, conscientiousness, quality of relationship and mood were assessed and a brief neuropsychological battery administered. Carers rated their own stress and well-being and reported on neuropsychiatric symptoms. A series of regression analyses predicting QoL-AD were carried out, identifying key variables in each domain of assessment to take forward to an overall model. RESULTS: Cognitive impairment was not related to QoL. The final model accounted for 57% of the variance in QoL-AD scores, with significant contributions from depressed mood, severity of irritability shown by the person with dementia, self-concept, quality of relationship (rated by the person with dementia) and male gender. The bivariate relationships of QoL-AD with awareness of memory function, awareness of functional abilities and conscientiousness were mediated by both depressed mood and self-concept. CONCLUSIONS: This study reports the most comprehensive approach to evaluation of awareness to date. Most of the indices of awareness used are not related to self-reported QoL. Discrepancies in evaluative judgements of memory function and functional abilities between people with dementia and carers are related to QoL, but this relationship is mediated by both depressed mood and self-concept, which have a much stronger relationship with QoL. The validity of self-report measures of QoL in people with early stage dementia is supported by these results.
Abstract.
Author URL.
Caddell LS, Clare L (2013). A profile of identity in early-stage dementia and a comparison with healthy older people.
Aging and Mental Health,
17(3), 319-327.
Abstract:
A profile of identity in early-stage dementia and a comparison with healthy older people
The aim of the study was to determine whether people in the early stages of dementia experience their sense of identity differently to healthy older people and to examine whether different aspects of identity are related to each other in each group. This was a cross-sectional questionnaire-based study; 50 people with early-stage dementia and 50 age-matched people without dementia completed measures pertaining to different aspects of identity. Measures of mood and self-esteem were also included so that any differences could be taken into account in the analysis. There were very few differences in identity between the groups. After differences in levels of anxiety were accounted for, there were no differences in scores on most measures of identity. However, people in the early stages of dementia scored significantly lower on one subtotal for one measure of identity, whereas healthy older adults reported significantly more identity-related distress than people in the early stages of dementia. For both groups, there were no associations between different aspects of identity. People in the early stages of dementia do not differ much from healthy older adults in terms of their identity. Since healthy older people experience more distress relating to identity, they may be more likely to benefit from some sort of intervention than people in the early stages of dementia. It might be useful to consider identity as consisting of multiple components in future studies, rather than assuming that one aspect of identity represents the overall experience of identity. © 2013 Copyright Taylor and Francis Group, LLC.
Abstract.
Clare L, Whitaker R, Woods RT, Quinn C, Jelley H, Hoare Z, Downs M, Wilson B (2013). AN AWARENESS-BASED INTERVENTION TO IMPROVE QUALITY OF LIFE FOR RESIDENTS WITH SEVERE DEMENTIA IN LONG-TERM CARE.
GERONTOLOGIST,
53, 384-384.
Author URL.
Kurz A, Clare L, Lautenschlager NT (2013). Add life to years: Psychosocial interventions for people with cognitive disorders. International Psychogeriatrics, 25(9), 1389-1391.
Nelis S, Clare L, Whitaker CJ (2013). Attachment styles and attachment needs in people with dementia and family carers. Journal of Dementia Care, 21(4), 34-35.
Clare L, Whitaker R, Woods RT, Quinn C, Jelley H, Hoare Z, Woods J, Downs M, Wilson BA (2013). AwareCare: a pilot randomized controlled trial of an awareness-based staff training intervention to improve quality of life for residents with severe dementia in long-term care settings.
Int Psychogeriatr,
25(1), 128-139.
Abstract:
AwareCare: a pilot randomized controlled trial of an awareness-based staff training intervention to improve quality of life for residents with severe dementia in long-term care settings.
BACKGROUND: the extent to which care home residents with severe dementia show awareness is influenced by the extent to which the environment provides opportunities for engagement and by the way in which care staff interact with them. We aimed to establish whether training care staff to observe and identify signs of awareness in residents with severe dementia resulted in improved quality of life for residents. METHODS: in this pilot cluster randomized trial, care staff in four homes (n = 32) received training and supervision and carried out structured observations of residents using the AwareCare measure (n = 32) over an eight-week period, while staff in four control homes (n = 33) had no training with regard to their residents (n = 33) and no contact with the research team. The primary outcome was resident quality of life. Secondary outcomes were resident well-being, behavior and cognition, staff attitudes and well-being, and care practices in the home. RESULTS: Following intervention, residents in the intervention group had significantly better quality of life as rated by family members than those in the control group, but care staff ratings of quality of life did not differ. There were no other significant between-group differences. Staff participating in the intervention identified benefits in terms of their understanding of residents' needs. CONCLUSIONS: Staff were able to use the observational measure effectively and relatives of residents in the intervention homes perceived an improvement in their quality of life.
Abstract.
Author URL.
Kudlicka A, Clare L, Hindle JV (2013). Awareness of executive deficits in people with Parkinson's disease.
J Int Neuropsychol Soc,
19(5), 559-570.
Abstract:
Awareness of executive deficits in people with Parkinson's disease.
Executive functioning is frequently impaired among people with Parkinson's disease (PD). Little is known about awareness of executive functioning, in the sense of being able to accurately appraise functioning or performance, in people with PD, or about whether awareness is particularly affected in those who have impaired executive functioning. This study explored awareness of executive functioning at the levels of evaluative judgment (comparison of self- and informant ratings of executive functioning), and performance monitoring (comparison of performance on cognitive tests and self-ratings of that performance). Awareness levels were assessed in people with PD with and without executive deficits, and in healthy controls. When the level of agreement between self- and informant ratings was considered, people with PD in both groups appeared as accurate in evaluating their overall executive functioning as healthy controls. When appraising their performance as the specific tasks were completed, people with PD who had impairments in executive functioning appeared less accurate than controls and people with PD without executive impairments. People with PD who have executive deficits may lack the ability to recognize their limitations while performing specific tasks, which may have implications for their functional abilities.
Abstract.
Author URL.
van Paasschen J, Clare L, Yuen KSL, Woods RT, Evans SJ, Parkinson CH, Rugg MD, Linden DEJ (2013). Cognitive rehabilitation changes memory-related brain activity in people with Alzheimer disease.
Neurorehabil Neural Repair,
27(5), 448-459.
Abstract:
Cognitive rehabilitation changes memory-related brain activity in people with Alzheimer disease.
BACKGROUND: People with Alzheimer disease (AD) are capable of new learning when cognitive support is provided, suggesting that there is plasticity even in a degenerating brain. However, it is unclear how a cognition-focused intervention operates on a neural level. OBJECTIVE: the present study examined the effects of cognitive rehabilitation (CR) on memory-related brain activation in people with early-stage AD, as measured by functional magnetic resonance imaging (fMRI). METHODS: a total of 19 participants either received 8 weeks of CR treatment (n = 7) or formed a control group (n = 12). We scanned participants pretreatment and posttreatment while they learned and recognized unfamiliar face-name pairs. RESULTS: Following treatment, the CR group showed higher brain activation during recognition of face-name pairs in the left middle and inferior frontal gyri, the left insula, and 2s regions in the right medial parietal cortex. The control group showed decreased activation in these areas during recognition after the intervention period. Neither group showed an activation change during encoding. Behavioral performance on face-name learning did not improve for either group. CONCLUSIONS: We suggest that CR may have operated on the process of recognition through partial restoration of function in frontal brain areas that are less compromised in early-stage AD and that physiological markers may be more sensitive indicators of brain plasticity than behavioral performance.
Abstract.
Author URL.
Bahar-Fuchs A, Clare L, Woods B (2013). Cognitive training and cognitive rehabilitation for mild to moderate Alzheimer's disease and vascular dementia.
COCHRANE DATABASE OF SYSTEMATIC REVIEWS(6).
Author URL.
Bahar-Fuchs A, Clare L, Woods B (2013). Cognitive training and cognitive rehabilitation for persons with mild to moderate dementia of the Alzheimer's or vascular type: a review.
Alzheimers Res Ther,
5(4).
Abstract:
Cognitive training and cognitive rehabilitation for persons with mild to moderate dementia of the Alzheimer's or vascular type: a review.
Cognitive impairments, and particularly memory deficits, are a defining feature of the early stages of Alzheimer's disease and vascular dementia. Interventions that target these cognitive deficits and the associated difficulties with activities of daily living are the subject of ever-growing interest. Cognitive training and cognitive rehabilitation are specific forms of non-pharmacological intervention to address cognitive and non-cognitive outcomes. The present review is an abridged version of a Cochrane Review and aims to systematically evaluate the evidence for these forms of intervention in people with mild Alzheimer's disease or vascular dementia. Randomized controlled trials (RCTs), published in English, comparing cognitive rehabilitation or cognitive training interventions with control conditions and reporting relevant outcomes for the person with dementia or the family caregiver (or both), were considered for inclusion. Eleven RCTs reporting cognitive training interventions were included in the review. A large number of measures were used in the different studies, and meta-analysis could be conducted for several primary and secondary outcomes of interest. Several outcomes were not measured in any of the studies. Overall estimates of the treatment effect were calculated by using a fixed-effects model, and statistical heterogeneity was measured by using a standard chi-squared statistic. One RCT of cognitive rehabilitation was identified, allowing the examination of effect sizes, but no meta-analysis could be conducted. Cognitive training was not associated with positive or negative effects in relation to any of the reported outcomes. The overall quality of the trials was low to moderate. The single RCT of cognitive rehabilitation found promising results in relation to some patient and caregiver outcomes and was generally of high quality. The available evidence regarding cognitive training remains limited, and the quality of the evidence needs to improve. However, there is still no indication of any significant benefits from cognitive training. Trial reports indicate that some gains resulting from intervention may not be captured adequately by available standardized outcome measures. The results of the single RCT of cognitive rehabilitation show promise but are preliminary in nature. Further well-designed studies of cognitive training and cognitive rehabilitation are required to provide more definitive evidence. Researchers should describe and classify their interventions appropriately by using the available terminology.
Abstract.
Author URL.
Clare L, Bayer A, Burns A, Corbett A, Jones R, Knapp M, Kopelman M, Kudlicka A, Leroi I, Oyebode J, et al (2013). Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT).
Trials,
14Abstract:
Goal-oriented cognitive rehabilitation in early-stage dementia: study protocol for a multi-centre single-blind randomised controlled trial (GREAT).
BACKGROUND: Preliminary evidence suggests that goal-oriented cognitive rehabilitation (CR) may be a clinically effective intervention for people with early-stage Alzheimer's disease, vascular or mixed dementia and their carers. This study aims to establish whether CR is a clinically effective and cost-effective intervention for people with early-stage dementia and their carers. METHODS/DESIGN: in this multi-centre, single-blind randomised controlled trial, 480 people with early-stage dementia, each with a carer, will be randomised to receive either treatment as usual or cognitive rehabilitation (10 therapy sessions over 3 months, followed by 4 maintenance sessions over 6 months). We will compare the effectiveness of cognitive rehabilitation with that of treatment as usual with regard to improving self-reported and carer-rated goal performance in areas identified as causing concern by people with early-stage dementia; improving quality of life, self-efficacy, mood and cognition of people with early-stage dementia; and reducing stress levels and ameliorating quality of life for carers of participants with early-stage dementia. The incremental cost-effectiveness of goal-oriented cognitive rehabilitation compared to treatment as usual will also be examined. DISCUSSION: If the study confirms the benefits and cost-effectiveness of cognitive rehabilitation, it will be important to examine how the goal-oriented cognitive rehabilitation approach can most effectively be integrated into routine health-care provision. Our aim is to provide training and develop materials to support the implementation of this approach following trial completion.
Abstract.
Author URL.
Caddell LS, Clare L (2013). How does identity relate to cognition and functional abilities in early-stage dementia?.
Neuropsychol Dev Cogn B Aging Neuropsychol Cogn,
20(1), 1-21.
Abstract:
How does identity relate to cognition and functional abilities in early-stage dementia?
OBJECTIVES: the aim of the study was to investigate the relationships between identity and cognitive and functional abilities in people with early-stage dementia. METHOD: Fifty people in the early stages of dementia completed measures of identity and cognitive and functional abilities, including autobiographical memory. Multiple regression analyzes were used to determine whether it was possible to predict any of the variance in identity from cognitive and functional abilities, or from autobiographical memory alone. RESULTS: it was possible to predict approximately a quarter of the variance in two out of three aspects of identity from cognitive and functional abilities. The relationships between aspects of identity and autobiographical memory functioning were very weak. DISCUSSION: the relationship between identity and cognitive and functional abilities is not straightforward. There is no evidence to suggest a linear relationship between an overall decline in cognitive functioning and a deterioration in identity.
Abstract.
Author URL.
Pike KE, Kinsella GJ, Ong B, Mullaly E, Rand E, Storey E, Ames D, Saling M, Clare L, Parsons S, et al (2013). Is the WMS-IV verbal paired associates as effective as other memory tasks in discriminating amnestic mild cognitive impairment from normal aging?.
Clinical Neuropsychologist,
27(6), 908-923.
Abstract:
Is the WMS-IV verbal paired associates as effective as other memory tasks in discriminating amnestic mild cognitive impairment from normal aging?
Paired associate learning tasks are reportedly particularly sensitive to preclinical Alzheimers disease. We aimed to determine the effectiveness of the recently updated Wechsler Memory Scale verbal paired associates (VPA) in distinguishing the earliest stages of memory impairment (amnestic mild cognitive impairment, aMCI), and the clinical application at the case level, compared with other episodic memory tasks. Participants were 77 people with aMCI and 77 matched healthy older adults (HOA). VPA performance distinguished aMCI from HOA at the group level with large effect sizes, of similar size to the other tasks at immediate recall, but smaller than the CVLT-II list-learning task at delayed recall. Similarly, receiver operating characteristic (ROC) analysis demonstrated good discrimination, similar to other tasks, but again with CVLT-II more accurate at delayed recall. Although group differences remained for normative data, on a case basis using existing normative data the VPA failed to identify 70% of aMCI as impaired. The findings suggest further examination of the normative data is required before the VPA is useful in clinical practice, and highlight the importance of comprehensive neuropsychological assessment in detecting mild memory changes in older adults. © 2013 Taylor & Francis.
Abstract.
Opdebeeck C, Nelis S, Quinn C, Clare L (2013). MOOD, THINKING STYLE AND COGNITION IN LATER LIFE: THE IMPACT OF COGNITIVE RESERVE.
GERONTOLOGIST,
53, 454-454.
Author URL.
Clare L, Whitaker CJ, Roberts JL, Nelis SM, Martyr A, Marková IS, Roth I, Woods RT, Morris RG (2013). Memory awareness profiles differentiate mild cognitive impairment from early-stage dementia: evidence from assessments of performance monitoring and evaluative judgement.
Dement Geriatr Cogn Disord,
35(5-6), 266-279.
Abstract:
Memory awareness profiles differentiate mild cognitive impairment from early-stage dementia: evidence from assessments of performance monitoring and evaluative judgement.
BACKGROUND: Measures of memory awareness based on evaluative judgement and performance monitoring are often regarded as equivalent, but the Levels of Awareness Framework suggests they reflect different awareness phenomena. Examination of memory awareness among groups with differing degrees of impairment provides a test of this proposition. METHOD: Ninety-nine people with dementia (PwD), 30 people with mild cognitive impairment (PwMCI), and their relatives completed isomorphic performance monitoring and evaluative judgement measures of memory awareness and were followed up at 12 and (PwD only) 20 months. In addition to the resulting awareness indices, comparative accuracy scores were calculated using the relatives' data to establish whether any inaccuracy was specific to self-ratings. RESULTS: When making evaluative judgements about their memory in general, both PwD and PwMCI tended to overestimate their own functioning relative to informant ratings made by relatives. When monitoring performance on memory tests, PwD again overestimated performance relative to test scores, but PwMCI were much more accurate. Comparative accuracy scores indicated that, unlike PwD, PwMCI do not show a specific inaccuracy in self-related appraisals. CONCLUSIONS: the results support the proposition that awareness indices at the levels of evaluative judgement and performance monitoring should be regarded as reflecting distinct awareness phenomena.
Abstract.
Author URL.
Roberts JL, Clare L (2013). Meta-representational awareness in mild cognitive impairment: an interpretative phenomenological analysis.
Aging Ment Health,
17(3), 300-309.
Abstract:
Meta-representational awareness in mild cognitive impairment: an interpretative phenomenological analysis.
Awareness in mild cognitive impairment (MCI) has been studied primarily from a quantitative perspective, which has yielded inconclusive results. A qualitative approach may provide a more in-depth profile of awareness of symptoms and changes among people living with MCI. Few qualitative studies have considered awareness in MCI; therefore, the focus here will be on the experience of living with MCI, and particularly on the psychological impact of living with memory difficulties and how these impact on daily life. Twenty five participants with a clinical diagnosis of MCI who had been informed of their diagnosis were interviewed. Interpretative phenomenological analysis was used to analyse interview transcripts. Four higher order themes were identified. An exploratory model is proposed with a dominant theme of 'Fear and uncertainty'; this underpins 'Interdependence', 'Life goes on as normal' and 'Disavowal of difficulty' which are representative of coping responses resulting from appraisal of memory and cognitive difficulties. Participants did not use the term 'MCI', suggesting that this term had little meaning for them; nevertheless, there was a wish for a definitive explanation of the difficulties. The themes elicited from participant accounts indicate that the symptoms of MCI are perceived as a threat to psychological well-being which results in context-specific appraisal of the symptoms of MCI.
Abstract.
Author URL.
Yates JA, Clare L, Woods RT (2013). Mild cognitive impairment and mood: a systematic review.
Reviews in Clinical Gerontology,
23(4), 317-356.
Abstract:
Mild cognitive impairment and mood: a systematic review
This systematic review, with meta-analyses conducted where data were available, aimed to investigate the prevalence of symptoms of depression and anxiety in mild cognitive impairment (MCI), and to establish how symptoms of depression and anxiety relate to the progression from no cognitive impairment to MCI, and from MCI to dementia. Sixty studies were included in the review. Meta-analyses indicated that symptoms of depression and anxiety were more prevalent in people with MCI than in people with normal cognitive function, and increased the risk of progression from no cognitive impairment to MCI. There were mixed results regarding the effect of such symptoms on progression from MCI to dementia. The findings highlight the need for more research in this area, which can inform attempts to slow or halt the progression of cognitive impairment in later life, with resulting benefits for quality of life. Copyright © Cambridge University Press 2013.
Abstract.
Quinn C, Clare L, McGuinness T, Woods RT (2013). Negotiating the balance: the triadic relationship between spousal caregivers, people with dementia and Admiral Nurses.
Dementia (London),
12(5), 588-605.
Abstract:
Negotiating the balance: the triadic relationship between spousal caregivers, people with dementia and Admiral Nurses.
Informal caregiving for a person with dementia often takes place within a health care triad, whose members include the caregiver, the care-recipient and the health care-professional. The aim of the current study was to explore how the members work together with this triadic context. Six spousal caregiving dyads and the three Admiral Nurses who worked with the couples were interviewed. Transcripts of these interviews were analysed to form six case studies, each containing the perspectives of the three members of the triad. The processes emerging in these case studies were encompassed under an overarching dynamic process of 'negotiating the balance'. This describes the ongoing struggle of the members to balance the views of the other members against their own needs. Coalitions could occur as members worked together to tackle problems. The findings of this study highlight the importance of exploring the perspectives of all members of the triad. This should help health care professionals to improve the quality of the support they provide to caregivers and care-recipients.
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Author URL.
Hindle JV, Petrelli A, Clare L, Kalbe E (2013). Nonpharmacological enhancement of cognitive function in Parkinson's disease: a systematic review.
Mov Disord,
28(8), 1034-1049.
Abstract:
Nonpharmacological enhancement of cognitive function in Parkinson's disease: a systematic review.
Cognitive decline and dementia are frequent in patients with Parkinson's disease (PD). The evidence for nonpharmacological therapies in Alzheimer's disease and other dementias has been studied systematically, but the evidence is unclear for their efficacy in cognition and dementia in PD. An international collaboration produced a comprehensive, systematic review of the effectiveness and of nonpharmacological and noninvasive therapies in cognitively intact, cognitively impaired, and PD dementia groups. The interventions included cognitive rehabilitation, physical rehabilitation, exercise, and brain stimulation techniques but excluded invasive treatments, such as surgery and deep brain stimulation. The potential biases and evidence levels for controlled trials (CTs) were analyzed based on Cochrane and National Institute for Health and Clinical Excellence criteria. After exclusions, 18 studies were reviewed, including 5 studies of cognitive training, 4 of exercise and physical therapies, 4 of combined cognitive and physical interventions, and 5 of brain stimulation techniques. The methodology, study populations, interventions, outcomes, control groups, analyses, results, limitations, biases, and evidence levels of all reviewed studies were described. There were 9 CTs, including 6 randomized CTs (RCTs). Although 5 trials showed positive results, only 1 study of cognitive training achieved evidence grading of 1+ with a low risk of bias. There were no studies on PD dementia. Current research on nonpharmacological therapies for cognitive dysfunction and dementia in PD is very limited in quantity and quality. There is an urgent need for rigorous RCTs of nonpharmacological treatments for cognitive impairment and dementia in PD.
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Author URL.
Kudlicka A, Clare L, Hindle JV (2013). Pattern of executive impairment in mild to moderate Parkinson's disease.
Dement Geriatr Cogn Disord,
36(1-2), 50-66.
Abstract:
Pattern of executive impairment in mild to moderate Parkinson's disease.
BACKGROUND/AIMS: the exact pattern of impairment in executive functions (EF) among people with Parkinson's disease (PD) is still debated. Using a data-driven approach we investigated which areas of EF are particularly problematic in mild to moderate PD. METHODS: Thirty-four patients with mild to moderate PD, who scored in the normal range on general cognition screening tests, but displayed frontal-type deficits indicated by Frontal Assessment Battery screening, completed the 9 tests that comprise the Delis-Kaplan Executive Function System. Patterns of performance were explored using cluster analysis and principal component analysis (PCA), and the frequency of impairments was established using normative data. RESULTS: Both cluster analysis and PCA identified two distinct groups of EF tests. The first group included tests requiring time-efficient attentional control (e.g. the Trail Making test). The second group included tests measuring abstract reasoning and concept formation abilities (e.g. the 20 Questions test). Impairment was more frequent on the attentional control tests than on the abstract thinking tests. CONCLUSION: PD pathology in the mild to moderate PD appears to affect the attentional control aspect of EF to a greater extent than abstract reasoning. Understanding the nature of executive deficits in PD is important for the development of targeted pharmacological and cognitive interventions for cognitive disturbances.
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Clare L, Nelis S, Martyr A, Markova IS, Roth I, Woods RT, Whitaker CJ, Morris RG (2013). QUALITY OF LIFE IN EARLY-STAGE DEMENTIA: LONGITUDINAL TRAJECTORIES AND PREDICTORS OF CHANGE.
GERONTOLOGIST,
53, 8-8.
Author URL.
Hutchens RL, Kinsella GJ, Ong B, Pike KE, Clare L, Ames D, Saling MM, Storey E, Mullaly E, Rand E, et al (2013). Relationship between control beliefs, strategy use, and memory performance in amnestic mild cognitive impairment and healthy aging.
Journals of Gerontology - Series B Psychological Sciences and Social Sciences,
68(6), 862-871.
Abstract:
Relationship between control beliefs, strategy use, and memory performance in amnestic mild cognitive impairment and healthy aging
Objectives. Little information is available regarding the extent of strategy use and factors that affect strategy use in amnestic mild cognitive impairment (aMCI). This study aimed to compare spontaneous strategy use and beliefs about the controllability of memory between aMCI and healthy older adult (HOA) samples and to explore the relationships between beliefs, strategy use, and memory performance for both groups. Method. The aMCI and HOA groups each composed of 60 individuals matched for age and education. The Memory Controllability Inventory was used to assess control beliefs, and the extent of semantic clustering on a list-learning task provided a measure of spontaneous strategy use. Results. The aMCI group endorsed lower control beliefs and demonstrated poorer semantic clustering and memory performance compared with the HOA group. Although strategy use partially mediated the control beliefs-memory performance relationship for the HOA group, this was not replicated for the aMCI group. Discussion. Despite the weak relationship between control beliefs and strategy use, and control beliefs and memory performance for the aMCI group, the strong relationship between strategy use and memory performance provides impetus for further research into factors that can be used as a means of enhancing strategy use in interventions for aMCI. © the Author 2013. Published by Oxford University Press on behalf of the Gerontological Society of America. All rights reserved.
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Clare L, Whitaker CJ, Nelis SM, Martyr A, Markova IS, Roth I, Woods RT, Morris RG (2013). Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life.
Int J Geriatr Psychiatry,
28(5), 494-503.
Abstract:
Self-concept in early stage dementia: profile, course, correlates, predictors and implications for quality of life.
OBJECTIVE: Although it is increasingly accepted that people with dementia retain a sense of self, there is a need for empirical evidence regarding the nature of the self-concept in early stage dementia, how this changes over time and how it relates to quality of life. METHODS: Self-concept was assessed using the short form of the Tennessee Self-concept Scale in 95 individuals with early stage dementia; 63 were reassessed after 12 months, and 45 were seen again at 20 months. Participants also completed measures of mood, cognitive functioning and quality of life. Caregivers provided proxy ratings of self-concept, completed measures of symptoms and distress at symptoms and rated their own levels of stress and well-being. RESULTS: Self-ratings of self-concept were close to the average range for the standardization sample, and the distribution did not differ significantly from expected values. Although caregiver ratings were slightly lower, discrepancies were small. There were no significant changes over time in self-ratings or informant ratings or discrepancies. At Time 1, self-ratings were predicted by anxiety, depression and memory, caregiver ratings were predicted by caregiver distress and by depression in the person with dementia and discrepancies were predicted by caregiver distress. These models remained predictive at later time points. Self-rated self-concept predicted quality of life, with the relationship only partially mediated by depression and anxiety. CONCLUSIONS: Self-concept appears largely intact in early stage dementia, but in view of the association between self-concept and quality of life, a preventive approach focused on supporting self-concept may offer benefits as dementia progresses.
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Caddell LS, Clare L (2013). Studying the self in people with dementia: how might we proceed?.
Dementia (London),
12(2), 192-209.
Abstract:
Studying the self in people with dementia: how might we proceed?
The impact of dementia on the self has become the subject of much research over the last few years, mainly due to the implications for support and care for people with dementia. However, there are a number of limitations of this research that make it difficult to integrate the existing evidence and to draw any firm conclusions regarding the persistence of self. This highlights the need for a different approach to studying the self in people with dementia in order to obtain more robust evidence from future studies. This paper attempts to integrate current research using an existing systematic and comprehensive framework of the self, and outlines the advantages and limitations of using such a framework as the basis for future studies.
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Noel-Storr AH, Flicker L, Ritchie CW, Nguyen GH, Gupta T, Wood P, Walton J, Desai M, Solomon DF, Molena E, et al (2013). Systematic review of the body of evidence for the use of biomarkers in the diagnosis of dementia.
Alzheimer's and Dementia,
9(3).
Abstract:
Systematic review of the body of evidence for the use of biomarkers in the diagnosis of dementia
Background: Although recent diagnostic criteria for Alzheimer's disease propose the use of biomarkers, validation of these biomarkers by diagnostic test accuracy studies is a necessary first step, followed by the synthesis of the evidence from these studies in systematic reviews and meta-analyses. The quality of the resulting evidence depends on the number and size of the primary studies, their quality, and the adequacy of their reporting. This systematic review assesses the weight and quality of the evidence available from primary diagnostic test accuracy studies. Methods: a MEDLINE search was performed in August 2011 to identify all potentially relevant publications relating to the biomarkers β-amyloid, tau, positron emission tomography ( 18F-fluorodeoxyglucose or ligands for amyloid), or magnetic resonance imaging (MRI). The reporting and methodology were assessed using the Standards for Reporting of Diagnostic Accuracy and Quality Assessment of Diagnostic Accuracy Studies assessment tools, respectively. Because clinical progression to dementia is the most commonly used reference standard, this review focuses on participants with objective cognitive impairment but no dementia at baseline. Results: of the 19,104 published references identified by the search, 142 longitudinal studies relating to the biomarkers of interest were identified, which included subjects who had objective cognitive impairment but no dementia at baseline. The highest number of studies (n = 70) and of participants (n = 4722) related to structural MRI. MRI also yielded the highest number of studies with extractable data for meta-analysis (n = 32 [46% of all structural MRI studies]), followed by cerebrospinal fluid tau (n = 24 [73%]). There were few studies on positron emission tomography ligands for amyloid having suitable data for meta-analysis (n = 4). There was considerable variation across studies in reporting outcomes, methods of blinding and selection, means of accounting for indeterminate or missing values, the interval between the test and assessments, and the determination of test thresholds. Conclusions: the body of evidence for biomarkers is not large and is variable across the different types of biomarkers. Important information is missing from many study reports, highlighting the need for standardization of methodology and reporting to improve the rigor of biomarker validation. © 2013 the Alzheimer's Association. All rights reserved.
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Vidovich MR, Lautenschlager NT, Flicker L, Clare L, Almeida OP (2013). Treatment fidelity and acceptability of a cognition-focused intervention for older adults with mild cognitive impairment (MCI).
International Psychogeriatrics,
25(5), 815-823.
Abstract:
Treatment fidelity and acceptability of a cognition-focused intervention for older adults with mild cognitive impairment (MCI)
Background: Acceptability and fidelity assessments are an integral part of research, although few published trials comment on these processes in detail. Methods: We designed a randomized controlled trial (RCT) to identify the benefits of a cognition-focused intervention for older adults with mild cognitive impairment. Participants completed a six-item feedback questionnaire identifying level of satisfaction with their allocated intervention; this formed the acceptability assessment. Audio recordings of all sessions were reviewed and systematically assessed and rated for consistency of delivery (fidelity assessment). Results: Mean attendance (standard deviation) was 8.1 sessions (2.8) for the cognitive activity (CA) group and 8.4 (2.6) for the control general education group. There were no differences between groups regarding clarity and interest, willingness to attend the program in the community and pay a fee. Both groups reported the interventions to be relevant to their needs; however, this was rated more highly by the CA group (p < 0.01). There was high adherence to delivery of program content across both groups, yielding consistency scores above 95%. Conclusion: This study illustrates a systematic approach to assess acceptability and fidelity. The results show that the intervention was well received and met the needs of all participants. The manualized structure of the sessions facilitated the systematic implementation and reproducibility of the interventions. Acceptability and fidelity assessments have implications for the validity of assumptions made regarding trial outcomes and should therefore be included as standard process in RCTs. © 2013 International Psychogeriatric Association.
Abstract.
Clare L, Nelis SM, Martyr A, Whitaker CJ, Marková IS, Roth I, Woods RT, Morris RG (2012). 'She might have what I have got': the potential utility of vignettes as an indirect measure of awareness in early-stage dementia.
Aging Ment Health,
16(5), 566-575.
Abstract:
'She might have what I have got': the potential utility of vignettes as an indirect measure of awareness in early-stage dementia.
OBJECTIVES: in early-stage dementia, awareness at the meta-representational level involving a person's appraisal of his/her own condition and its implications has usually been assessed by interview, but contextual factors may influence responding. We examined the utility of an indirect, vignette-based method of eliciting awareness. METHOD: Three vignettes describing early-stage dementia, established dementia and healthy ageing were used to elicit views of the problem and the kinds of advice that might be helpful for the characters depicted. Responses were obtained from 91 people with early-stage Alzheimer's, vascular or mixed dementia, 87 carers and 80 older controls. For the participants with dementia, awareness was assessed in separate in-depth interviews and rated on a five-point scale for comparison purposes. RESULTS: Participants with dementia were often able to correctly identify the problems described in the vignettes, although scoring lower than carers or controls. Participants with dementia were also able to offer advice for those depicted, although to a lesser extent than carers or controls. Ability to offer advice was greater where MMSE scores were higher. For participants with dementia, vignette scores were moderately correlated with ratings derived from interviews, and those showing limited or no awareness offered fewer items of advice than those showing some or good awareness. In addition, 29% of participants with dementia spontaneously pointed out similarities between their own condition and that of the person depicted. CONCLUSIONS: the vignette method may be useful where resources preclude the use of in-depth interviews, and may supplement in-depth interviews as part of a multi-dimensional assessment of awareness.
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Nelis SM, Clare L, Whitaker CJ (2012). Attachment representations in people with dementia and their carers: implications for well-being within the dyad.
Aging Ment Health,
16(7), 845-854.
Abstract:
Attachment representations in people with dementia and their carers: implications for well-being within the dyad.
OBJECTIVES: the process of developing and living with dementia may activate attachment feelings and behaviours in people with dementia (PwD) and their carers. By obtaining information from both PwD and carer, we aimed to provide information on the nature and concordance of attachment patterns within the dyad and to examine the relative contribution of attachment representations in PwD and carers to the well-being of both parties. METHOD: Ninety-seven PwD and their carers completed categorical and dimensional ratings of attachment. PwD also rated their self-concept, mood and quality of life. Carers rated the functional ability of PwD and neuropsychiatric symptoms and measures of subjective well-being. RESULTS: People with dementia reported more insecure than secure attachment, with the most frequently reported style being dismissive attachment. Attachment security for PwD was related to more positive self-concept and less symptoms of anxiety. Attachment was not related to quality of life in PwD, but mood and self-concept were strong predictors of quality of life. Carer attachment security was related to their psychological health. Distress at symptoms and MMSE score of the PwD were the strongest predictors of stress. There was no association between PwD and carer attachment styles; PwD working models of attachment did not predict carer well-being and vice versa. CONCLUSION: Attachment representations may be important for the psychological well-being of PwD and carers, but there was no evidence of the reciprocal nature of attachment within these dyads.
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Clare L, Whitaker R, Quinn C, Jelley H, Hoare Z, Woods B, Downs M, Wilson B (2012). AwareCare: development and validation of an observational measure of awareness in people with severe dementia.
Neuropsychol Rehabil,
22(1), 113-133.
Abstract:
AwareCare: development and validation of an observational measure of awareness in people with severe dementia.
Signs of sensory and perceptual awareness can be observed in people with very severe dementia, and may be influenced by the extent to which the environment offers appropriate stimulation. We developed an observational tool, AwareCare, which care staff can use to identify signs of awareness in residents with very severe dementia, based on the concept of the Wessex Head Injury Matrix (WHIM). Using WHIM items as a guide, and following focus groups with care staff and family members, an expert panel identified 28 environmental stimuli and 35 response categories for the initial version of AwareCare. After baseline assessments of cognition, well-being and quality of life were taken, 40 residents were observed individually for 30 minutes on 5 occasions. Based on the observational data, 10 stimulus categories and 14 response categories were identified for further analysis and formed the final version of AwareCare. All participants showed awareness to varying degrees. Social stimuli elicited the most responses. Greater awareness was associated with better cognitive function, self-care, mobility, and responsiveness, but not with proxy-rated quality of life. Understanding the nature of awareness in this group is an important element in ensuring appropriate levels of interaction and stimulation, and hence enhancing quality of care.
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Delprado J, Kinsella G, Ong B, Pike K, Ames D, Storey E, Saling M, Clare L, Mullaly E, Rand E, et al (2012). Clinical measures of prospective memory in amnestic mild cognitive impairment.
Journal of the International Neuropsychological Society,
18(2), 295-304.
Abstract:
Clinical measures of prospective memory in amnestic mild cognitive impairment
Recent research has established that individuals with amnestic mild cognitive impairment (aMCI) have impaired prospective memory (PM); however, findings regarding differential deficits on time-based versus event-based PM have been less clear. Furthermore, the diagnostic utility of PM measures has received scant attention. Healthy older adults (n = 84) and individuals with aMCI (n = 84) were compared on the Cambridge Prospective Memory Test (CAMPROMPT) and two single-trial event-based PM tasks. The aMCI participants showed global impairment on all PM measures. Measures of retrospective memory and complex attention predicted both time and event PM performance for the aMCI group. Each of the PM measures was useful for discriminating aMCI from healthy older adults and the time- and event-based scales of the CAMPROMPT were equivalent in their discriminative ability. Surprisingly, the brief PM tasks were as good as more comprehensive measures of PM (CAMPROMPT) at predicting aMCI. Results indicate that single-trial PM measures, easily integrated into clinical practice, may be useful screening tools for identifying aMCI. As PM requires retrospective memory skills along with complex attention and executive skills, the interaction between these skills may explain the global PM deficits in aMCI and the good discriminative ability of PM for diagnosing aMCI. Copyright © the International Neuropsychological Society 2012.
Abstract.
Clare L (2012). Cognitive rehabilitation in early-stage dementia: Evidence, practice and future directions. The Effectiveness of Rehabilitation for Cognitive Deficits, 9780198526544
Anderson ND, Guild EB, Cyr AA, Roberts J, Clare L (2012). Contributions of frontal and medial temporal lobe functioning to the errorless learning advantage.
Neuropsychological Rehabilitation,
22(2), 169-186.
Abstract:
Contributions of frontal and medial temporal lobe functioning to the errorless learning advantage
Among individuals with episodic memory impairments, trial-and-error learning is less successful than when errors are avoided. This errorless learning advantage has been replicated numerous times, but its neurocognitive mechanism is uncertain, with existing evidence pointing to both medial temporal lobe (MTL) and frontal lobe (FL) involvement. To test the relative contribution of MTL and FL functioning to the errorless learning advantage, 51 healthy older adults were pre-experimentally assigned to one of four groups based on their neuropsychological test performance: Low MTL-Low FL, Low MTL-High FL, High MTL-Low FL, High MTL-High FL. Participants learned two word lists under errorless learning conditions, and two word lists under errorful learning conditions, and memory was tested via free recall, cued recall, and source recognition. Performance on all three tests was better for those with High relative to Low MTL functioning. An errorless learning advantage was found in free and cued recall, in cued recall marginally more so for those with Low than High MTL functioning. Participants with Low MTL functioning were also more likely to misclassify learning errors as target words. Overall, these results are consistent with a MTL locus of the errorless learning advantage. The results are discussed in terms of the multi-componential nature of neuropsychological tests and the impact of demographic and mood variables on cognitive functioning. © 2012 Copyright Psychology Press.
Abstract.
Martyr A, Clare L (2012). Executive function and activities of daily living in Alzheimer's disease: a correlational meta-analysis.
Dement Geriatr Cogn Disord,
33(2-3), 189-203.
Abstract:
Executive function and activities of daily living in Alzheimer's disease: a correlational meta-analysis.
BACKGROUND: the assessment of executive function (EF) and activities of daily living (ADL) are important elements in the diagnosis of Alzheimer's disease. METHODS: Following a comprehensive search in three databases, a random-effects meta-analysis was used to investigate the association between ADL ability and seventeen tests of EF, three tests of attention and working memory and the Mini-Mental State Examination. The association between EF and ADL ability was further investigated in relation to four different methods of assessing ADL, and one specific ADL, driving. RESULTS: Forty-nine studies met the inclusion criteria, and a total of 3,663 participants were included, the majority of whom were diagnosed with Alzheimer's disease. Most of the individual tests, including commonly used tests of EF such as the Clock Drawing Test, Letter Fluency and the Trail Making Test Part B, showed a significant moderate association with ADL. Associations between EF and ADL ability were similar for all four methods of assessing ADL ability. Driving ability was also moderately associated with EF. CONCLUSION: the meta-analysis suggests a consistent moderate association between ADL and EF, supporting the growing evidence for a link between ADL and executive dysfunction in early dementia.
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Nelis S, Clare L, Woods R, Martyr A, Markova I, Roth I, Whitaker C, Morris R (2012). F5‐03‐01: the vignette as an indirect measure of awareness in early dementia. Alzheimer's & Dementia, 8(4S_Part_20), p727-p728.
Clare L, Nelis S, Roberts J, Robinson J, Woods R, Martyr A, Roth I, Markova I, Whitaker C, Morris R, et al (2012). F5‐03‐03: a longitudinal study of the dissociation between implicit and explicit indications of awareness using the emotional Stroop effect for dementia‐related words in early stage dementia. Alzheimer's & Dementia, 8(4S_Part_20), p728-p728.
Caddell LS, Clare L (2012). Identity, mood, and quality of life in people with early-stage dementia.
Int Psychogeriatr,
24(8), 1306-1315.
Abstract:
Identity, mood, and quality of life in people with early-stage dementia.
BACKGROUND: There is little empirical research regarding the relationships between identity and well-being in people with dementia. The aim of the study was to explore the relationship of identity with mood and quality of life (QoL) in the people in the early stages of dementia. METHOD: This was a cross-sectional questionnaire-based study. Fifty people in the early stages of dementia completed measures pertaining to different aspects of identity, mood, and QoL. Multiple regression analyses were carried out to determine whether it was possible to predict any of the variance in mood and QoL from aspects of identity. RESULTS: it was possible to predict 12.8% of the variance in anxiety, 23.4% of the variance in depression, and 25.1% of the variance in QoL from different aspects of identity. Predictors varied for each dependent variable. CONCLUSIONS: Aspects of identity predict a modest proportion of the variance in anxiety, depression, and QoL. This suggests that supporting identity in people with dementia who are experiencing difficulties in this regard might have a positive impact on mood and QoL. However, the majority of the variance in mood and QoL must be accounted for by other variables.
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Hutchens RL, Ong B, Pike KE, Parsons S, Ames D, Mullaly E, Rand E, Kinsella GJ, Storey E, Saling MM, et al (2012). Knowledge and use of memory strategies in Amnestic mild cognitive impairment.
Psychology and Aging,
27(3), 768-777.
Abstract:
Knowledge and use of memory strategies in Amnestic mild cognitive impairment
Despite the inclusion of memory strategy training in many interventions for amnestic mild cognitive impairment (aMCI), little research has directly examined knowledge and use of memory strategies in aMCI and their relationship to memory performance in order to guide the development of targeted interventions. The present study aimed to compare strategy knowledge and use between an aMCI and a healthy older adult (HOA) sample, and to determine the contribution of strategy knowledge and use to memory performance in each of these groups. The sample comprised 37 aMCI and 52 HOA participants aged over 60 years. All participants completed questionnaires to assess strategy knowledge and selfreported use of internal and external strategies in everyday life. In addition, strategy use was observed on the measures of retrospective and prospective memory performance (the CVLT-II and the CAMPROMPT). The aMCI group demonstrated decreased strategy knowledge and observed use of internal strategies, although equivalent observed use of external strategies compared with the HOA group. Furthermore, they reported equivalent use of both internal and external strategies. Observed use of strategies was significantly associated with retrospective memory performance for both groups and prospective memory performance for the aMCI group, supporting the inclusion of strategy training in interventions.
Abstract.
Clare L, Nelis SM, Martyr A, Whitaker CJ, Marková IS, Roth I, Woods RT, Morris RG (2012). Longitudinal trajectories of awareness in early-stage dementia.
Alzheimer Dis Assoc Disord,
26(2), 140-147.
Abstract:
Longitudinal trajectories of awareness in early-stage dementia.
Although it is often assumed that awareness decreases as dementia severity increases, there is limited evidence regarding changes in awareness over time. We examined awareness in 101 individuals with early-stage dementia (PwD) and their carers; 66 were reassessed after 12 months and 51 were seen again at 20 months. Awareness was assessed in relation to memory, everyday activities, and socio-emotional functioning using discrepancies between PwD and carer ratings on parallel questionnaires. PwD completed neuropsychological tests and measures of mood and quality of life. Carers completed measures of mood and stress. At initial assessment, discrepancies were greatest for activities of daily living, moderate for memory, and least pronounced for socio-emotional functioning. Discrepancy scores did not change over time. PwD self-ratings indicated perceived poorer functioning in everyday activities over time, but no change for memory and socio-emotional functioning. Carer ratings indicated perceived decline in everyday activities and socio-emotional functioning, but no change for memory. PwD declined in neuropsychological functioning, but self-ratings of depression, anxiety, and quality of life remained stable over time. Carer mood and stress levels also remained stable. At least in the earlier stages of dementia, it should not be assumed that awareness will inevitably decrease as dementia progresses.
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Clare L, Nelis SM, Whitaker CJ, Martyr A, Markova IS, Roth I, Woods RT, Morris RG (2012). Marital relationship quality in early-stage dementia: perspectives from people with dementia and their spouses.
Alzheimer Dis Assoc Disord,
26(2), 148-158.
Abstract:
Marital relationship quality in early-stage dementia: perspectives from people with dementia and their spouses.
Spouse caregivers of people with dementia (PwD) report relatively poor marital relationship quality (RQ), but few studies have obtained the perspective of the PwD, examined discrepancies between spouses, or considered changes in RQ over time. This study explored caregiver and PwD perceptions of RQ, identified associated factors, and examined changes over an 18-month period. Participants were 54 couples where one spouse had early-stage dementia and 54 were control couples. RQ was assessed with the Positive Affect Index. Measures of mood, stress, and quality of life (QoL) were also administered. The clinical couples were followed up after 9 and 18 months. Caregivers gave significantly lower RQ ratings than controls. PwD ratings did not differ significantly from those of caregivers or controls. Dyadic discrepancies were significantly greater in the clinical than in the control group. Caregiver ratings were associated with stress, whereas PwD ratings were associated with depression and QoL. Discrepancies were associated with caregiver stress and with PwD mood, QoL, and age. Caregiver ratings declined significantly over time; PwD ratings did not decline significantly, but showed different trends for men and women. It is important to consider RQ when considering how to support couples where one partner has early-stage dementia.
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Pike KE, Kinsella GJ, Ong B, Mullaly E, Rand E, Storey E, Ames D, Saling M, Clare L, Parsons S, et al (2012). Names and numberplates: Quasi-everyday associative memory tasks for distinguishing amnestic mild cognitive impairment from healthy aging.
Journal of Clinical and Experimental Neuropsychology,
34(3), 269-278.
Abstract:
Names and numberplates: Quasi-everyday associative memory tasks for distinguishing amnestic mild cognitive impairment from healthy aging
Amnestic mild cognitive impairment (aMCI) delineates a population at high risk for subsequently developing Alzheimer's disease (AD)-that is, people with preclinical AD. Associative episodic memory tasks are particularly sensitive to preclinical AD; however, they often lack ecological validity, which is important when evaluating performance in daily activities. We describe the development of two quasi-everyday associative memory tasks-the La Trobe Face-Name test and the La Trobe Numberplate task-and their utility in profiling and separating 70 aMCI participants from 101 healthy older adults (HOA) compared with standard episodic memory tasks. aMCI participants performed significantly worse overall and demonstrated a greater forgetting rate than HOA on both tasks. The everyday tasks separated aMCI from HOA participants as effectively as standard episodic memory tasks and were well tolerated. These tasks provide a valuable addition to neuropsychologists' toolkits with enhanced ecological (verisimilitude) and face validity for assisting in counseling clients, measuring the effect of interventions, and profiling everyday memory performance in HOA and aMCI. © 2012 Psychology Press, an imprint of the Taylor & Francis Group, an Informa business.
Abstract.
Kolanowski AM, Hill N, Clare L, Marx P (2012). Practical Protocol for Implementing Cognitive Stimulation in Persons with Delirium Superimposed on Dementia.
Nonpharmacol Ther Dement,
2(2), 101-110.
Abstract:
Practical Protocol for Implementing Cognitive Stimulation in Persons with Delirium Superimposed on Dementia.
Delirium is common in persons with dementia and often accompanies acute medical or surgical conditions. These individuals are at risk for an accelerated decline in their cognitive and physical function. For this reason, interventions that help resolve delirium are critically needed. We have developed a non-pharmacological intervention for delirium in persons with dementia based on our prior interdisciplinary work on delirium, dementia and cognitive stimulation. The intervention uses recreational activities that are alerting, capture attention, and provide cognitive stimulation that encourages cognitive processing in support of cognitive function. In this paper we describe the practical protocol we have developed for implementing these activities, and present a video that will enhance treatment fidelity for studies that replicate the approach.
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Author URL.
Noel-Storr AH, Flicker L, Ritchie CW, Nguyen GH, Gupta T, Wood P, Walton J, Desai M, Solomon DF, Molena E, et al (2012). Systematic review of the body of evidence for the use of biomarkers in the diagnosis of dementia. Alzheimer's and Dementia
Clare L, Hindle JV, Jones IR, Thom JM, Nelis SM, Hounsome B, Whitaker CJ (2012). The AgeWell study of behavior change to promote health and wellbeing in later life: study protocol for a randomized controlled trial.
Trials,
13Abstract:
The AgeWell study of behavior change to promote health and wellbeing in later life: study protocol for a randomized controlled trial.
BACKGROUND: Lifestyle factors playing a role in the development of late-life disability may be modifiable. There is a need for robust evidence about the potential for prevention of disability through behavior change interventions. METHODS/DESIGN: This feasibility study involves the development, implementation and initial testing of a behavior change intervention in a naturalistic setting. A small-scale randomized controlled trial (RCT) will investigate the implementation of a goal-setting intervention aimed at promoting behavior change in the domains of physical and cognitive activity in the context of a community resource center for over-50s. Healthy older participants attending the center (n = 75) will be randomized to one of three conditions: control (an interview involving a general discussion about the center); goal-setting (an interview involving identification of up to five personal goals in the domains of physical activity, cognitive activity, diet and health, and social engagement); or goal-setting with mentoring (the goal-setting interview followed by bi-monthly telephone mentoring). All participants will be reassessed after 12 months. Primary outcomes are levels of physical and cognitive activity. Secondary outcomes address psychosocial (self-efficacy, mood, quality of life), cognitive (memory and executive function), and physical fitness (functional and metabolic) domains. Cost-effectiveness will also be examined. DISCUSSION: This study will provide information about the feasibility of a community-based lifestyle intervention model for over-50s and of the implementation of a goal-setting intervention for behavior change, together with initial evidence about the short-term effects of goal-setting on behavior. TRIAL REGISTRATION: Current Controlled Trials ISRCTN30080637 (http://www.controlled-trials.com).
Abstract.
Author URL.
Quinn C, Clare L, McGuinness T, Woods RT (2012). The impact of relationships, motivations, and meanings on dementia caregiving outcomes.
Int Psychogeriatr,
24(11), 1816-1826.
Abstract:
The impact of relationships, motivations, and meanings on dementia caregiving outcomes.
BACKGROUND: Numerous theoretical models have been developed to explore how caregiving can impact on caregiving outcomes. However, limited attention has been given to the effects of caregivers' motivations for providing care, the meaning they find in caregiving, and the nature of their relationship with the care-recipient. The current study explored the associations between intrinsic and extrinsic motivations, ability to find meaning in caregiving, and pre-caregiving and current relationship quality, and the way in which these variables interact to influence caregiving outcomes. METHODS: This was a cross-sectional questionnaire study, in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. RESULTS: the results showed that intrinsic motivations, meaning, and pre-caregiving and current relationship quality were significantly related to each other, while extrinsic motivations were only related to intrinsic motivations and meaning. All these factors were significantly related to caregiving outcomes as measured by caregiver burden, role captivity, and competence. CONCLUSIONS: Based on these findings, it is recommended that interventions aimed at reducing caregiving stress should take into account the impact of the quality of the relationship and the caregivers' motivations for providing care. More longitudinal research is needed to explore how meanings, motivations, and relationship quality change over the caregiving career.
Abstract.
Author URL.
Clare L, Nelis SM, Martyr A, Roberts J, Whitaker CJ, Markova IS, Roth I, Woods RT, Morris RG (2012). The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: testing a biopsychosocial model.
Int J Geriatr Psychiatry,
27(2), 167-177.
Abstract:
The influence of psychological, social and contextual factors on the expression and measurement of awareness in early-stage dementia: testing a biopsychosocial model.
BACKGROUND: Insufficient attention has been paid to the influence of psychological and social factors on discrepancy-based measures of awareness. OBJECTIVES: the present study tested a biopsychosocial model of awareness in early-stage dementia by gathering evidence regarding the relative contributions of neuropsychological, individual psychological and social factors to the level of scoring on measures used to index awareness. METHOD: Awareness was assessed in relation to memory, activities of daily living and social functioning in 101 individuals with early-stage dementia participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. People with dementia (PwD) and carers also completed measures of individual psychological and social variables, and PwD completed measures of neuropsychological functioning. RESULTS: Scores on discrepancy-based indices of awareness and on the self-ratings and informant ratings contributing to these indices were associated with a range of factors including neuropsychological functioning of PwD, individual traits and dispositions and current affective functioning of PwD, socio-demographic characteristics of PwD and carers, carer well-being and carer perceptions of PwD and of quality of relationship with PwD. Patterns of association varied across domains of functioning. CONCLUSIONS: the findings support the relevance of a biopsychosocial approach to understanding the factors that influence unawareness of impairment in dementia.
Abstract.
Author URL.
Martyr A, Clare L, Nelis SM, Marková IS, Roth I, Woods RT, Whitaker CJ, Morris RG (2012). Verbal fluency and awareness of functional deficits in early-stage dementia.
Clin Neuropsychol,
26(3), 501-519.
Abstract:
Verbal fluency and awareness of functional deficits in early-stage dementia.
Assessment of activities of daily living is an important element in the diagnosis of dementia, with research suggesting a link between functional ability and cognition. We investigated the relationship between self- and informant ratings of instrumental activities of daily living (iADL) and verbal executive functioning in early-stage dementia. A total of 96 people with early-stage Alzheimer's disease or vascular or mixed dementia and their carers completed the Functional Activities Questionnaire; people with dementia also completed a test of letter fluency. Letter fluency was associated with self-ratings of iADL, while informant ratings of iADL were associated with the age and Mini-Mental State Examination score of the person with dementia. Self-ratings of perceived functioning suggested significantly less impairment than informant ratings. Those with impaired letter fluency rated themselves as having greater difficulties in iADLs than those who performed better. People with early-stage dementia vary in their subjective level of awareness of their iADL functioning, and difficulties with language production may contribute to better awareness of iADL impairments.
Abstract.
Author URL.
Quinn C, Clare L, Woods RT (2012). What predicts whether caregivers of people with dementia find meaning in their role?.
Int J Geriatr Psychiatry,
27(11), 1195-1202.
Abstract:
What predicts whether caregivers of people with dementia find meaning in their role?
BACKGROUND: Informal dementia caregiving has traditionally been perceived as an extremely stressful process; however, more recent research has started to focus on the positive aspects of providing care. Studies indicate that caregivers who derive something positive out of caregiving have better well-being. However, there has been little exploration of the factors linked to caregivers identifying positive aspects of providing care. The aim of the current study was to explore the predictors of finding meaning in caregiving. METHODS: This was a cross-sectional questionnaire study in which the respondents were 447 caregivers of people with dementia who were in receipt of a specialist nursing service. The questionnaire contained measures of meaning, relationship quality, caregivers' motivations to provide care, role captivity and caregiving competence. RESULTS: Correlational analyses showed that higher meaning was associated with being a spousal caregiver, providing greater hours of care, higher religiosity, a better pre-caregiving and current relationship quality, higher competence, lower role captivity, higher intrinsic motivations and higher extrinsic motivations. Hierarchical regression analyses indicated that variance in finding meaning was significantly predicted by high religiosity, high competence, high intrinsic motivations and low role captivity. CONCLUSION: from these findings, it is recommended that interventions should help caregivers focus on positive aspects of providing care and enhance their feelings of competence.
Abstract.
Author URL.
Nelis S, Clare L, Whitaker CJ, Quinn C (2011). ATTACHMENT ORGANIZATION AND THE SOCIAL AND EMOTIONAL WELL-BEING OF OLDER ADULTS.
GERONTOLOGIST,
51, 576-576.
Author URL.
Clare L, Nelis S, Whitaker CJ (2011). ATTACHMENT REPRESENTATIONS IN PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS: IMPLICATIONS FOR WELL-BEING.
GERONTOLOGIST,
51, 576-576.
Author URL.
Clare L, Marková IS, Roth I, Morris RG (2011). Awareness in Alzheimer's disease and associated dementias: theoretical framework and clinical implications.
Aging Ment Health,
15(8), 936-944.
Abstract:
Awareness in Alzheimer's disease and associated dementias: theoretical framework and clinical implications.
BACKGROUND: Awareness can be defined as a reasonable or realistic perception or appraisal of a given aspect of one's situation, functioning or performance, or of the resulting implications, expressed explicitly or implicitly. Disturbances of awareness have significant implications for people with dementia and their caregivers. The construction of awareness has been extensively studied in dementia, but a lack of conceptual and methodological clarity in this area means that few clear findings have emerged. AIMS: This article presents a framework for conceptualizing awareness in people with Alzheimer's disease and associated dementias that can guide research and influence practice. OVERVIEW: This article begins by considering the general concept of awareness and the ways in which neurological damage can place constraints on awareness. Within an integrative biopsychosocial model that acknowledges the influence of neurocognitive, psychological, and social variables on awareness, challenges for empirical research on awareness in dementia are addressed, and a 'levels of awareness' framework is presented within which awareness operates at four levels of increasing complexity, providing a means of differentiating among awareness phenomena. Approaches to mapping awareness phenomena are discussed, and directions for future research and clinical practice are outlined. CONCLUSIONS: the levels of awareness framework should act as a stimulus to further research in this area, resulting in a more coherent understanding of the nature of awareness deficits, the implications of these for people with dementia and their caregivers, and the possibilities for targeted and effective interventions.
Abstract.
Author URL.
Nelis SM, Clare L, Martyr A, Markova I, Roth I, Woods RT, Whitaker CJ, Morris RG (2011). Awareness of social and emotional functioning in people with early-stage dementia and implications for carers.
Aging Ment Health,
15(8), 961-969.
Abstract:
Awareness of social and emotional functioning in people with early-stage dementia and implications for carers.
OBJECTIVES: This study explores the extent to which awareness of social and emotional function is reduced in early-stage dementia and whether this relates to the quality of life of the person with dementia (PwD), the quality of the relationship between the PwD and carer and carer stress. METHOD: Ninety-seven participants with a diagnosis of Alzheimer's, vascular or mixed dementia rated their social functioning using the Socio-Emotional Questionnaire (SEQ). Carers provided parallel ratings, allowing calculation of discrepancy scores used to index awareness. Neuropsychiatric symptoms, PwD quality of life, the perceived quality of the relationship for both partners and carer stress were also measured. RESULTS: Factor analysis of the SEQ indicated three domains of social functioning: emotional recognition and empathy (ERE), social relationships (SR) and prosocial behaviour (PB). For PwD unawareness was related to cognitive dysfunction and psychiatric disturbance, but not to quality of life or quality of relationship. Lower awareness was associated with greater carer stress and poorer perceived quality of relationship. CONCLUSION: Lack of awareness of social functioning had important implications for relationship quality and levels of carer stress.
Abstract.
Author URL.
Martin M, Clare L, Altgassen AM, Cameron MH, Zehnder F (2011). Cognition-based interventions for healthy older people and people with mild cognitive impairment.
COCHRANE DATABASE OF SYSTEMATIC REVIEWS(1).
Author URL.
Martyr A, Clare L, Nelis SM, Roberts JL, Robinson JU, Roth I, Markova IS, Woods RT, Whitaker CJ, Morris RG, et al (2011). Dissociation between implicit and explicit manifestations of awareness in early stage dementia: evidence from the emotional Stroop effect for dementia-related words.
Int J Geriatr Psychiatry,
26(1), 92-99.
Abstract:
Dissociation between implicit and explicit manifestations of awareness in early stage dementia: evidence from the emotional Stroop effect for dementia-related words.
OBJECTIVE: to determine whether people with dementia (PwD), and carers of PwD, show a processing bias to dementia-related words in an emotional Stroop task, and if so, whether the presence of such a bias is related to level of explicit awareness of the condition. METHOD: Seventy-nine people with early stage Alzheimer's disease (AD), vascular or mixed dementia, and their carers, completed an emotional Stroop task. Time taken to colour-name dementia-related and neutral words was compared within and between groups. Additionally, as a comparison, ratings of the awareness of the condition shown by PwD were made on the basis of a detailed interview with each PwD and his/her carer. RESULTS: PwD and carers showed the same level of increase in response times to salient compared to neutral words. In the PwD this effect was unrelated to the degree of awareness that they demonstrated regarding the condition. CONCLUSIONS: the emotional Stroop effect in response to dementia-related words in PwD indicates that preserved implicit awareness of the condition can be elicited even where there is reduced explicit awareness.
Abstract.
Author URL.
Kudlicka A, Clare L, Hindle JV (2011). Executive functions in Parkinson's disease: systematic review and meta-analysis.
Mov Disord,
26(13), 2305-2315.
Abstract:
Executive functions in Parkinson's disease: systematic review and meta-analysis.
Impairment of executive function (EF) is commonly reported as a feature of PD. However, the exact pattern of executive impairment remains unclear. Also, there is an ongoing discussion surrounding the definition and conceptualization of EF, which might affect the clarity of research evidence on cognition in PD. The aim of this systematic review was to describe the pattern of executive impairment in early-stage PD emerging from the research literature and to identify critical issues for improving consistency in this field. The PsychInfo, MEDLINE, Science Direct, CINAHL, and Cochrane Library databases were searched using the term "Parkinson's disease" combined with each of 14 cognitive abilities defined as representing aspects of EF. The review was limited to studies that investigated EF as the central variable in early-stage, nondemented PD patients. The review identified 33 studies of EF that were operationalized in terms of 30 abilities tested by 60 measures and variously interpreted. Many measures were used only once, so only a small part of the available research evidence could be synthesized in the meta-analysis. The meta-analysis was undertaken using data from five commonly used tests of EF drawn from 18 studies. This revealed consistent evidence for cognitive difficulties across all five EF tests. Research on EF in PD is characterized by a considerable lack of clarity with regard to measure selection and interpretation. The findings support the view that EF impairments are evident in PD. However, the clinical significance of the cognitive abnormalities reported has yet to be clarified.
Abstract.
Author URL.
Barnard PJ, Murphy FC, Carthery-Goulart MT, Ramponi C, Clare L (2011). Exploring the basis and boundary conditions of SenseCam-facilitated recollection.
Memory,
19(7), 758-767.
Abstract:
Exploring the basis and boundary conditions of SenseCam-facilitated recollection
SenseCam review has been shown to promote and sustain subsequent access to memories that might otherwise remain inaccessible. While SenseCam review facilitates recollection for personally experienced events, we know little about the boundary conditions under which this operates and about how underlying processing mechanisms can be optimally recruited to offset memory impairments of the sort that occur in dementia. This paper considers some of these issues with a view to targeting future research that not only clarifies our evolving body of theory about how memory works, but also informs about how memory-assistive technologies for patients might be employed to maximal effect. We begin by outlining key factors that are known to influence recollection. We then examine variability in the decline of memory function both in normal ageing and in dementia. Attention is drawn to similarities in the recollection deficits associated with depression and dementia, and we suggest that this may reflect shared underlying mechanisms. We conclude by discussing how one particular theoretical rationale can be intersected with key SenseCam capabilities to define priorities for ongoing and future SenseCam research. © 2011 Psychology Press, an imprint of the Taylor & Francis Group, an Informa business.
Abstract.
Clare L, Evans S, Parkinson C, Woods R, Linden D (2011). Goal-setting in cognitive rehabilitation for people with early-stage Alzheimer's Disease.
Clinical Gerontologist,
34(3), 220-236.
Abstract:
Goal-setting in cognitive rehabilitation for people with early-stage Alzheimer's Disease
This article draws upon findings from a recent randomized controlled trial of cognitive rehabilitation to consider the extent to which people with early-stage Alzheimer's Disease (n = 69) were able to identify individual rehabilitation goals, and what kinds of goals were important to them. For those assigned to receive cognitive rehabilitation (n = 22), we further examine the nature of the goals selected as the basis for therapy, and analyze within-group results with regard to efficacy. All participants were able to identify goals and to rate their performance and satisfaction with performance. Participants assigned to cognitive rehabilitation worked on selected goals, and clinically significant improvements in performance and satisfaction ratings for these goals were corroborated by therapist ratings and goal attainment indicators. © Taylor & Francis Group, LLC.
Abstract.
Caddell LS, Clare L (2011). I'm still the same person: the impact of early-stage dementia on identity.
Dementia,
10(3), 379-398.
Abstract:
I'm still the same person: the impact of early-stage dementia on identity
Research suggests that the onset and progression of dementia may pose a threat to a person's sense of identity. This qualitative study used Interpretative Phenomenological Analysis to explore participants' perceptions of the impact of dementia on their identity. Participants were ten people with dementia. The four themes emerging from the data represented participants' views on aspects of their current identities, whether they believed that dementia would alter their identities in the future, perceptions of how dementia had affected their lifestyle, and relationships with friends and family. The analysis suggested that for the most part, participants felt that little had changed with respect to their identities as a whole, but most identified features of themselves that were different than they had been prior to the onset of dementia. Thus it appeared that participants were in a state of flux, experiencing both continuity and change in their sense of identity simultaneously. © the Author(s) 2011.
Abstract.
Caddell LS, Clare L (2011). IS IDENTITY COMPROMISED IN PEOPLE IN THE EARLY STAGES OF DEMENTIA?.
GERONTOLOGIST,
51, 225-226.
Author URL.
Caddell LS, Clare L (2011). Interventions supporting self and identity in people with dementia: a systematic review.
Aging Ment Health,
15(7), 797-810.
Abstract:
Interventions supporting self and identity in people with dementia: a systematic review.
OBJECTIVES: Recently, researchers have started to focus on ways to support self and identity in people with dementia. The purpose of this review is to discuss the main features of existing interventions aiming to support self and identity in people with dementia, to draw conclusions regarding the effectiveness of these interventions and to highlight the implications for future research. METHOD: Systematic review of intervention studies aiming to support self and identity in people with dementia. RESULTS: Ten studies met the inclusion criteria. All reported some benefits to participants. There were significant methodological limitations and study quality was generally low. The interventions varied in terms of participant characteristics, content and outcome measures, making it difficult to draw overall conclusions about effectiveness. CONCLUSIONS: Interventions aiming to support self and identity in people with dementia are currently in the early stages of development. Firm recommendations cannot be made at this time. Further well-designed studies are required to provide more robust evidence.
Abstract.
Author URL.
Clare L, Whitaker CJ, Nelis SM, Martyr A, Markova IS, Roth I, Woods RT, Morris RG (2011). Multidimensional assessment of awareness in early-stage dementia: a cluster analytic approach.
Dement Geriatr Cogn Disord,
31(5), 317-327.
Abstract:
Multidimensional assessment of awareness in early-stage dementia: a cluster analytic approach.
BACKGROUND/AIMS: Research on awareness in dementia has yielded variable and inconsistent associations between awareness and other factors. This study examined awareness using a multidimensional approach and applied cluster analytic techniques to identify associations between the level of awareness and other variables. METHODS: Participants were 101 individuals with early-stage dementia (PwD) and their carers. Explicit awareness was assessed at 3 levels: performance monitoring in relation to memory, evaluative judgement in relation to memory, everyday activities and socio-emotional functioning, and metacognitive reflection in relation to the experience and impact of the condition. Implicit awareness was assessed with an emotional Stroop task. RESULTS: Different measures of explicit awareness scores were related only to a limited extent. Cluster analysis yielded 3 groups with differing degrees of explicit awareness. These groups showed no differences in implicit awareness. Lower explicit awareness was associated with greater age, lower MMSE scores, poorer recall and naming scores, lower anxiety and greater carer stress. CONCLUSION: Multidimensional assessment offers a more robust approach to classifying PwD according to level of awareness and hence to examining correlates and predictors of awareness.
Abstract.
Author URL.
Kolanowski AM, Fick DM, Clare L, Steis M, Boustani M, Litaker M (2011). Pilot Study of a Nonpharmacological Intervention for Delirium Superimposed on Dementia.
RESEARCH IN GERONTOLOGICAL NURSING,
4(3), 161-167.
Author URL.
Thom JM, Clare L (2011). Rationale for combined exercise and cognition-focused interventions to improve functional independence in people with dementia.
Gerontology,
57(3), 265-275.
Abstract:
Rationale for combined exercise and cognition-focused interventions to improve functional independence in people with dementia.
Evidence suggests that exercise and some cognition-focused intervention approaches can be used to elicit functional improvements in older people and, to some degree, those diagnosed with dementia. Independently, the two intervention types have been found to improve functional performance in people with dementia. The mechanisms underpinning these improvements come from comparable and diverse pathways. This suggests that it may be beneficial for the two intervention types to be coupled as part of regular care in individuals with a range of cognitive impairments. The aims of this review are threefold. The first aim is to present evidence to support the use for combining exercise and cognition-focused interventions. This will be achieved by reviewing the mechanisms of both approaches in improving functional performance in older people and in people with dementia and summarising recent progress. The increased risk of depression, falls and cardiovascular disease risk in people with dementia will also be highlighted. The second aim is to discuss the parameters of the two approaches that should be considered when combining them in terms of possible efficient models, especially in relation to exercise protocols as this is where the current literature shows the most promising outcomes. Maximisation of the efficacy of preventative and treatment interventions which focus on both cognitive functioning and physical health should lead to improving and extending functional independence. Key aspects of any combined intervention would involve the inclusion of both cardiovascular and other types of exercises, including falls reduction, and exercises addressing memory and executive function via goal setting in the real-life context. The third aim is to explore some of the issues that may arise when attempting to incorporate interventions into the regular treatment of people with dementia. Consideration must also be given to caregivers and the education of health professionals as well as to the mode of intervention itself. Further research is necessary in order to discern the most effective types of both intervention models. Provision of combined interventions might enhance the improvements in functional independence in people with dementia over and above the interventions being used separately.
Abstract.
Author URL.
Clare L, Nelis S, Martyr A, Whitaker CJ, Markova IS, Roth I, Woods RT, Morris RG (2011). SENSE OF IDENTITY IN EARLY-STAGE DEMENTIA.
GERONTOLOGIST,
51, 226-226.
Author URL.
Kolanowski AM, Fick DM, Litaker MS, Clare L, Leslie D, Boustani M (2011). Study protocol for the recreational stimulation for elders as a vehicle to resolve delirium superimposed on dementia (Reserve for DSD) trial.
Trials,
12Abstract:
Study protocol for the recreational stimulation for elders as a vehicle to resolve delirium superimposed on dementia (Reserve for DSD) trial
Background: Delirium is a state of confusion characterized by an acute and fluctuating decline in cognitive functioning. Delirium is common and deadly in older adults with dementia, and is often referred to as delirium superimposed on dementia, or DSD. Interventions that treat DSD are not well-developed because the mechanisms involved in its etiology are not completely understood. We have developed a theory-based intervention for DSD that is derived from the literature on cognitive reserve and based on our prior interdisciplinary work on delirium, recreational activities, and cognitive stimulation in people with dementia. Our preliminary work indicate that use of simple, cognitively stimulating activities may help resolve delirium by helping to focus inattention, the primary neuropsychological deficit in delirium. Our primary aim in this trial is to test the efficacy of Recreational Stimulation for Elders as a Vehicle to resolve DSD (RESERVE- DSD).Methods/Design: This randomized repeated measures clinical trial will involve participants being recruited and enrolled at the time of admission to post acute care. We will randomize 256 subjects to intervention (RESERVE-DSD) or control (usual care). Intervention subjects will receive 30-minute sessions of tailored cognitively stimulating recreational activities for up to 30 days. We hypothesize that subjects who receive RESERVE-DSD will have: decreased severity and duration of delirium; greater gains in attention, orientation, memory, abstract thinking, and executive functioning; and greater gains in physical function compared to subjects with DSD who receive usual care. We will also evaluate potential moderators of intervention efficacy (lifetime of complex mental activities and APOE status). Our secondary aim is to describe the costs associated with RESERVE-DSD.Discussion: Our theory-based intervention, which uses simple, inexpensive recreational activities for delivering cognitive stimulation, is innovative because, to our knowledge it has not been tested as a treatment for DSD. This novel intervention for DSD builds on our prior delirium, recreational activity and cognitive stimulation research, and draws support from cognitive reserve theory.Trial registration: ClinicalTrials.gov identifier: NCT01267682. © 2011 Kolanowski et al; licensee BioMed Central Ltd.
Abstract.
Nelis S, Clare L, Martyr A, Markova IS, Roth I, Woods RT, Whitaker CJ, Morris R (2010). AWARENESS OF SOCIAL AND EMOTIONAL FUNCTIONING IN EARLY-STAGE DEMENTIA AND IMPLICATIONS FOR CAREGIVERS.
GERONTOLOGIST,
50, 62-62.
Author URL.
Kolanowski AM, Fick DM, Clare L, Therrien B, Gill DJ (2010). An intervention for delirium superimposed on dementia based on cognitive reserve theory.
Aging and Mental Health,
14(2), 232-242.
Abstract:
An intervention for delirium superimposed on dementia based on cognitive reserve theory
Delirium superimposed on dementia (DSD) accelerates the trajectory of functional decline and results in prolonged hospitalization, re-hospitalization, premature nursing home placement, and death. In this article we propose a theory-based intervention for DSD that is derived from the literature on cognitive reserve and neuroplasticity. We begin by defining cognitive reserve, the guiding framework for our hypothesis. We review the pathophysiology and neuropsychology of delirium noting the similarities with dementia-these two conditions reflecting acute and chronic reductions in cognitive reserve, respectively. We then review the evidence for activity-dependent plasticity as a possible mechanism for sparing cognitive reserve in dementia and its potential for addressing DSD. Cognitive training (CT) in the form of stimulating activities has been shown to evoke cognitive processing and facilitate plasticity in dementia. Because of the similarities between dementia and delirium, the use of recreational activities as a vehicle for supporting attentional capacity, and delivering cognitive stimulation, may hold promise for the resolution of DSD. Based on integrated evidence from the literature, we hypothesize that engagement in cognitively stimulating recreational activities will help reduce delirium severity and duration in persons with dementia while providing improved quality of life and reduced costs of care.
Abstract.
Clare L, Whitaker CJ, Nelis SM (2010). Appraisal of memory functioning and memory performance in healthy ageing and early-stage Alzheimer's disease.
Neuropsychol Dev Cogn B Aging Neuropsychol Cogn,
17(4), 462-491.
Abstract:
Appraisal of memory functioning and memory performance in healthy ageing and early-stage Alzheimer's disease.
BACKGROUND/AIMS: to compare memory evaluations in healthy older people and people with Alzheimer's disease (AD) and present standardised individual and dyadic methods for classifying degree of memory awareness in the participants with dementia. METHODS: Cross-sectional study evaluating awareness of memory functioning and performance and providing normative data for healthy individuals and couples, together with comparison data from people with AD. RESULTS: As a group, older people are reasonably accurate raters of their own memory functioning and performance, although considerable individual differences can be observed, and control dyads show good comparative accuracy. Comparing normative data from the control group to data from participants with AD confirms that significant overestimation is a frequent feature among people with dementia, with approximately two-thirds showing this pattern, although significant under-estimation is also reliably observed in a small proportion of people with dementia. Different types of measure elicit different profiles of memory awareness in participants with dementia. CONCLUSION: Normative data from older individuals and couples provides useful percentile-based indices for determining level of memory awareness in people with dementia.
Abstract.
Author URL.
Clare L (2010). Awareness in people with severe dementia: review and integration.
Aging Ment Health,
14(1), 20-32.
Abstract:
Awareness in people with severe dementia: review and integration.
OBJECTIVE: Although awareness has been extensively researched in relation to people with dementia, studies have focussed mainly on people who have dementia of mild to moderate severity. Consequently, relatively little is known about awareness in people with severe dementia, and there is no clear conceptual framework to indicate how this should be understood or investigated. METHOD: This review presents a conceptual framework for considering awareness in people with moderate to severe dementia which distinguishes fundamental awareness of sensory and perceptual stimuli and three levels of awareness involving more complex cognitive operations, termed 'on-line monitoring', 'evaluative judgement' and 'meta-representation', and provides an integration of the available evidence regarding each level. RESULTS: Findings indicate that sensory and perceptual awareness can be detected even in people with very severe or end-stage dementia, while some aspects of complex awareness may be retained into the severe stages. CONCLUSIONS: the environmental context and the nature of caregiving interactions influence the extent to which awareness is expressed. There may be scope for enhancing the expression of some aspects of awareness in people with moderate to severe dementia, but this should only be undertaken where it is likely to improve quality of life. Understanding more about awareness is an important element in the provision of high-quality care for people with moderate to severe dementia.
Abstract.
Author URL.
Bentham AMMP, McKay AP, Quemada I, Clare L, Eastwood N, McKenna PJ (2010). Delusions in Schizophrenia: a Phenomenological and Psychological Exploration. Cognitive Neuropsychiatry, 1(4), 289-304.
Clare L, Woods RT, Whitaker R, Wilson BA, Downs M (2010). Development of an awareness-based intervention to enhance quality of life in severe dementia: trial platform.
Trials,
11Abstract:
Development of an awareness-based intervention to enhance quality of life in severe dementia: trial platform.
BACKGROUND: Quality of residential care for people with severe dementia is in urgent need of improvement. One reason for this may be the assumption that people with severe dementia are unaware of what is happening to them. However, there is converging evidence to suggest that global assumptions of unawareness are inappropriate. This trial platform study aims to assist care staff in perceiving and responding to subtle signs of awareness and thus enhance their practice. METHODS/DESIGN: in Stage One, a measure of awareness in severe dementia will be developed. Two focus groups and an expert panel will contribute to item and scale development. In Stage Two observational data will be used to further develop the measure. Working in four care homes, we will recruit 40 individuals with severe dementia who have no, or very limited, verbal communication. Data on inter-rater reliability and frequency of all items and exploratory factor analysis will be used to identify items to be retained. Test-retest and inter-rater reliability for the new measure will be calculated. Correlations with scores for well-being and behaviour and with proxy ratings of quality of life will provide an indication of concurrent validity. In Stage Three the new measure will be used in a single blind cluster randomised trial. Eight care homes will participate, with 10 residents recruited in each giving a total sample of 80 people with severe dementia. Homes will be randomised to intervention or usual care conditions. In the intervention condition, staff will receive training in using the new measure and will undertake observations of designated residents. For residents with dementia, outcomes will be assessed in terms of change from baseline in scores for behaviour, well-being and quality of life. For care staff, outcomes will be assessed in terms of change from baseline in scores for attitudes, care practice, and well-being. DISCUSSION: the results will inform the design of a larger-scale trial intended to provide definitive evidence about the benefits of increasing the sensitivity of care staff to signs of awareness in residents with severe dementia. TRIAL REGISTRATION: ISRCTN59507580 http://www.controlled-trials.com.
Abstract.
Author URL.
Thornhill. H, Clare L, May R (2010). Escape, enlightenment and endurance. Anthropology & Medicine, 11(2), 181-199.
Clare L, Linden DEJ, Woods RT, Whitaker R, Evans SJ, Parkinson CH, van Paasschen J, Nelis SM, Hoare Z, Yuen KSL, et al (2010). Goal-oriented cognitive rehabilitation for people with early-stage Alzheimer disease: a single-blind randomized controlled trial of clinical efficacy.
Am J Geriatr Psychiatry,
18(10), 928-939.
Abstract:
Goal-oriented cognitive rehabilitation for people with early-stage Alzheimer disease: a single-blind randomized controlled trial of clinical efficacy.
OBJECTIVES: to provide evidence regarding the clinical efficacy of cognitive rehabilitation (CR) in early-stage Alzheimer disease (AD). DESIGN: Single-blind randomized controlled trial comparing CR with relaxation therapy and no treatment. SETTING: Outpatient, community-based setting. PARTICIPANTS: Sixty-nine individuals (41 women, 28 men; mean age 77.78 years, standard deviation 6.32, range = 56-89) with a diagnosis of AD or mixed AD and vascular dementia and a Mini-Mental State Examination score of 18 or above, and receiving a stable dose of acetylcholinesterase-inhibiting medication. Forty-four family carers also contributed. INTERVENTION: Eight weekly individual sessions of CR consisting of personalized interventions to address individually relevant goals supported by components addressing practical aids and strategies, techniques for learning new information, practice in maintaining attention and concentration, and techniques for stress management. MEASUREMENTS: the primary outcomes were goal performance and satisfaction, assessed using the Canadian Occupational Performance Measure. Questionnaires assessing mood, quality of life and career strain, and a brief neuropsychological test battery were also administered. A subset of participants underwent functional magnetic resonance imaging (fMRI). RESULTS: CR produced significant improvement in ratings of goal performance and satisfaction, whereas scores in the other two groups did not change. Behavioral changes in the CR group were supported by fMRI data for a subset of participants. CONCLUSIONS: the findings support the clinical efficacy of CR in early-stage AD. CR offers a means of assisting people with early-stage AD and their families in managing the effects of the condition.
Abstract.
Author URL.
Morris R, Clare L, Nelis S, Martyr A, Roth I, Markova IS, Woods RT, Whitaker CJ (2010). NEUROPSYCHOLOGICAL CORRELATES OF AWARENESS OF COGNITIVE OR BEHAVIOURAL DYSFUNCTION IN EARLY-STAGE DEMENTIA.
GERONTOLOGIST,
50, 62-62.
Author URL.
Olazarán J, Reisberg B, Clare L, Cruz I, Peña-Casanova J, Del Ser T, Woods B, Beck C, Auer S, Lai C, et al (2010). Nonpharmacological therapies in alzheimer's disease: a systematic review of efficacy.
Dementia and Geriatric Cognitive Disorders,
30(2), 161-178.
Abstract:
Nonpharmacological therapies in alzheimer's disease: a systematic review of efficacy
Introduction: Nonpharmacological therapies (NPTs) can improve the quality of life (QoL) of people with Alzheimer's disease (AD) and their carers. The objective of this study was to evaluate the best evidence on the effects of NPTs in AD and related disorders (ADRD) by performing a systematic review and meta-analysis of the entire field. Methods: Existing reviews and major electronic databases were searched for randomized controlled trials (RCTs). The deadline for study inclusion was September 15, 2008. Intervention categories and outcome domains were predefined by consensus. Two researchers working together detected 1,313 candidate studies of which 179 RCTs belonging to 26 intervention categories were selected. Cognitive deterioration had to be documented in all participants, and degenerative etiology (indicating dementia) had to be present or presumed in at least 80% of the subjects. Evidence tables, meta-analysis and summaries of results were elaborated by the first author and reviewed by author subgroups. Methods for rating level of evidence and grading practice recommendations were adapted from the Oxford Center for Evidence-Based Medicine. Results: Grade a treatment recommendation was achieved for institutionalization delay (multicomponent interventions for the caregiver, CG). Grade B recommendation was reached for the person with dementia (PWD) for: improvement in cognition (cognitive training, cognitive stimulation, multicomponent interventions for the PWD); activities of daily living (ADL) (ADL training, multicomponent interventions for the PWD); behavior (cognitive stimulation, multicomponent interventions for the PWD, behavioral interventions, professional CG training); mood (multicomponent interventions for the PWD); QoL (multicomponent interventions for PWD and CG) and restraint prevention (professional CG training); for the CG, grade B was also reached for: CG mood (CG education, CG support, multicomponent interventions for the CG); CG psychological well-being (cognitive stimulation, multicomponent interventions for the CG); CG QoL (multicomponent interventions for PWD and CG). Conclusion: NPTs emerge as a useful, versatile and potentially cost-effective approach to improve outcomes and QoL in ADRD for both the PWD and CG. Copyright © 2010 S. Karger AG.
Abstract.
Clare L, Nevis S, Martyr A, Markova IS, Roth I, Woods RT, Morris RG (2010). PERCEPTIONS OF RELATIONSHIP QUALITY IN PEOPLE WITH DEMENTIA AND THEIR SPOUSE CAREGIVERS.
GERONTOLOGIST,
50, 328-328.
Author URL.
Caddell LS, Clare L (2010). RELATIONSHIPS BETWEEN STRENGTH OF IDENTITY, FUNCTIONS OF IDENTITY AND WELL-BEING IN HEALTHY OLDER PEOPLE.
GERONTOLOGIST,
50, 286-286.
Author URL.
Oyebode JR, Clare L (2010). SPOUSAL RELATIONSHIPS IN DEMENTIA: CONNECTIONS BETWEEN RELATIONSHIPS, CARE AND WELL-BEING.
GERONTOLOGIST,
50, 328-328.
Author URL.
Clare L (2010). Supporting everyday activities for people with early stage AD: the benefits of cognitive rehabilitation. Journal of Dementia Care, 18(5), 37-38.
Clare L, Nelis S, Martyr A, Markova IS, Roth I, Woods RT, Whitaker CJ, Morris R (2010). TESTING a BIOPSYCHOSOCIAL MODEL OF AWARENESS IN EARLY-STAGE DEMENTIA.
GERONTOLOGIST,
50, 62-62.
Author URL.
Martyr A, Clare L, Nelis S, Roberts JL, Markova IS, Roth I, Woods RT, Morris RG (2010). THE EMOTIONAL STROOP EFFECT FOR MEMORY-RELATED WORDS IN PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS: INVESTIGATING THE IMPLICIT AWARENESS SYSTEM.
GERONTOLOGIST,
50, 63-63.
Author URL.
Quinn C, Clare L, Woods RT (2010). THE IMPACT OF CAREGIVING ON THE SPOUSAL RELATIONSHIP.
GERONTOLOGIST,
50, 328-328.
Author URL.
Caddell LS, Clare L (2010). THE IMPACT OF DEVELOPING DEMENTIA ON THE SELF.
GERONTOLOGIST,
50, 194-195.
Author URL.
Quinn C, Clare L, Woods RT, McGuinness T (2010). TRIADIC RELATIONSHIPS BETWEEN INFORMAL CAREGIVERS, PEOPLE WITH DEMENTIA, AND HEALTH CARE PROFESSIONALS.
GERONTOLOGIST,
50, 460-461.
Author URL.
Jones RSP, Clare L, MacPartlin C, Murphy O (2010). The Effectiveness of Trial-and-Error and Errorless Learning in Promoting the Transfer of Training.
European Journal of Behavior Analysis,
11(1), 29-36.
Abstract:
The Effectiveness of Trial-and-Error and Errorless Learning in Promoting the Transfer of Training
Despite an extensive literature showing successful application of errorless techniques in applied settings there has been some debate about the optimal circumstances surrounding the use of these techniques. The present study examined the hypothesis that trial-and-error learning conditions provide an advantage for performance on a ‘transfer’ task, compared to learning under errorless conditions. Two experiments are reported. In the first, 60 student participants engaged in four acquisition trials under errorless or trial-and-error conditions, consisting of mazes with one correct route and a number of incorrect routes. Both groups completed a fifth ‘transfer’ maze where the correct route contained portions of previous incorrect routes. In the second experiment, the same 60 participants completed a task involving identifying target words from word lists, again either in an errorless or a trial-and-error condition. Both learning conditions completed the same transfer task (anagram word task) and a recognition task. Data from both experiments indicated that during the transfer task, the trial-and-error group performed significantly better than the errorless group when there was a requirement to transfer the skill learned during the acquisition phase to a new related task. Data from the recognition task in experiment two suggested that the poorer performance of the errorless group was due to a reduced awareness of salient aspects of the S- during the acquisition phase.
Abstract.
Caddell LS, Clare L (2010). The impact of dementia on self and identity: a systematic review.
Clin Psychol Rev,
30(1), 113-126.
Abstract:
The impact of dementia on self and identity: a systematic review.
There is much debate in the literature as to the extent to which self and identity persist in people with dementia. The aim of this systematic review was to examine methods currently used to investigate self and identity in people with dementia, and the resulting evidence as to the persistence of self and identity throughout the course of the disease. Thirty-three studies were reviewed, which showed that many approaches have been taken to studying aspects of self and identity in dementia, including both quantitative and qualitative methods. This appears to be partly due to the differing underlying concepts of self that have been used as a basis for these studies. Consequently, results obtained from these studies are somewhat disparate, although it is possible to draw some tentative conclusions from the available evidence. Almost all of the studies suggest that there is at least some evidence for persistence of self in both the mild and moderate to severe stages of the illness, although many studies record some degree of deterioration in aspects of self or identity. Further research is required to clarify existing evidence and to address outstanding questions regarding self and identity in dementia.
Abstract.
Author URL.
Quinn C, Clare L, Woods RT (2010). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review.
Int Psychogeriatr,
22(1), 43-55.
Abstract:
The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review.
BACKGROUND: the majority of people in the early and middle stages of dementia are cared for at home by non-paid caregivers, the majority of whom will be family members. Two factors which could have an impact on the quality of care provided to the care-recipient are the caregiver's motivations for providing care and the meaning s/he finds in caregiving. The aim of this review is to explore the potential impact of both meaning and motivation on the wellbeing of caregivers of people with dementia. The review also explores individual differences in motivations to provide care. METHODS: This was a systematic review of peer-reviewed empirical studies exploring motivations and meanings in informal caregivers of people with dementia. Four studies were identified which examined the caregiver's motivations to provide care. Six studies were identified which examined the meaning that caregivers found in dementia caregiving. RESULTS: Caregivers' wellbeing could be influenced by the nature of their motivations to care. In addition, cultural norms and caregivers' kin-relationship to the care-recipient impacted on motivations to provide care. Finding meaning had a positive impact on caregiver wellbeing. CONCLUSIONS: the limited evidence currently available indicates that both the caregiver's motivations to provide care and the meaning s/he finds in caregiving can have implications for the caregiver's wellbeing. More research is needed to explore the role of motivations and meaning in dementia caregiving.
Abstract.
Author URL.
Quin RC, Clare L, Ryan P, Jackson M (2009). 'Not of this world': the subjective experience of late-onset psychosis.
Aging and Mental Health,
13(6), 779-787.
Abstract:
'Not of this world': the subjective experience of late-onset psychosis
Objectives: Psychosis with first onset after the age of 60 arising in the absence of dementia or primary affective disorder is thought to affect 2-4% of older people. Up to half will not respond fully to medication.The subjective experience of living with late-onset psychosis (LOP) has not yet been considered and this study represents a preliminary attempt to explore the subjective experience and psychological features of older people living with LOP. Method: the study was conducted in Ireland. Seven participants between the ages of 67 and 87 years who met diagnostic criteria for very late-onset schizophrenia-like psychosis were interviewed using a semi-structured interview schedule. Participants spoke about previous life experiences as well as the experience of developing and living with LOP. Interpretative phenomenological analysis was used to identify common themes within their accounts. Results: Four themes emerged which reflected participants' subjective experiences of earlier life stages as well as their current experiences of LOP. Three interrelated themes described participants' experiences of social isolation, a solitary coping style and the experience of the self as 'different'. A final theme reflected participants' attempts to explain and find meaning in their psychotic experiences. Conclusions: Results support the view that the experience of LOP emerges in the context of psychosocial vulnerabilities combined with adversities associated with the experience of ageing. © 2009 Taylor & Francis.
Abstract.
Peter Wills, Linda Clare, Peter Wil (2009). Assessing subtle memory impairments in the everyday memory performance of brain injured people: exploring the potential of the Extended Rivermead Behavioural Memory Test. Brain Injury, 14(8), 693-704.
van Paasschen J, Clare L, Woods RT, Linden DEJ (2009). Can we change brain functioning with cognition-focused interventions in Alzheimer's disease? the role of functional neuroimaging.
Restor Neurol Neurosci,
27(5), 473-491.
Abstract:
Can we change brain functioning with cognition-focused interventions in Alzheimer's disease? the role of functional neuroimaging.
PURPOSE: This review considers the application of functional magnetic resonance imaging (fMRI) to identify treatment effects and brain plasticity in cognition-focused interventions aimed at people with Alzheimer's disease (AD). At present there is little evidence available that bears directly on this question. Associative memory function is affected in the early stages of AD and also deteriorates disproportionately in comparison to other types of memory in healthy ageing. METHODS: We review paradigms from the literature on face-name learning in fMRI in three groups (AD, mild cognitive impairment, and healthy ageing) with the aim of developing a paradigm to measure treatment effects and functional plasticity following cognitive intervention. RESULTS: Previous studies have commonly selected participants with high levels of education, and have generally used challenging tasks, with considerable variations in level of task performance across studies. The findings of the review indicate that there is a need a simple face-name learning paradigm that can be used with people with AD, and which can be applied either as a single assessment tool to compare various subject groups or as an outcome tool to assess functional changes following a period of cognitive intervention. CONCLUSIONS: We make recommendations for such a paradigm and discuss pilot data showing the successful application of our paradigm in an individual with MCI.
Abstract.
Author URL.
Clare L, van Paasschen J, Evans SJ, Parkinson C, Woods RT, Linden DEJ (2009). Goal-oriented cognitive rehabilitation for an individual with Mild Cognitive Impairment: behavioural and neuroimaging outcomes.
Neurocase,
15(4), 318-331.
Abstract:
Goal-oriented cognitive rehabilitation for an individual with Mild Cognitive Impairment: behavioural and neuroimaging outcomes.
An individual, goal-oriented cognitive rehabilitation intervention was conducted with AB, a 77-year-old woman with MCI. Outcomes were evaluated using a client-centred measure of goal achievement and an experimental associative learning task testing a skill practised in the intervention. Pre- and post-intervention fMRI scans were compared to examine changes in brain activation. Following intervention, AB showed improved performance on rehabilitation goals and on the associative learning task. There were significant decreases in brain activation in sensory areas and significant increases in memory-related areas. Both client-centred measures and fMRI may assist in detecting clinically-meaningful changes resulting from cognitive rehabilitation interventions.
Abstract.
Author URL.
Zehnder F, Martin M, Altgassen M, Clare L (2009). Memory training effects in old age as markers of plasticity: a meta-analysis.
Restorative Neurology and Neuroscience,
27(5), 507-520.
Abstract:
Memory training effects in old age as markers of plasticity: a meta-analysis
In most studies on plasticity using behavioural data, cognitive plasticity has been studied in the context of short-term interventions such as memory training. In order to systematically review the literature on memory training and summarize its effects for old healthy people and people with mild cognitive impairment on multiple functional domains, we conducted a meta-analysis of all published randomized controlled trials (RCT) between 1970 and 2007. Overall, 24 studies examining memory training effects in healthy and in mildly cognitively impaired old adults were identified and included in the analysis. Only memory trainings (e.g. memory skills training, imagery, method of loci) with cognitive outcome measures, duration of intervention with up to one year with at least a baseline and a post-intervention assessment reported, were included. Results demonstrate significant training effects for paired associate learning and immediate and delayed recall in healthy old adults and for immediate recall in mildly cognitively impaired old adults. However, training effects were no larger than those found for active control conditions. Our results suggest that evidence on the effectiveness and specificity of training interventions is scarce. We discuss limitations of existing knowledge about the efficacy of memory training interventions and implications for future research to improve knowledge regarding effective cognitive interventions. © 2009 - IOS Press and the authors. All rights reserved.
Abstract.
Clare L, Singh K (2009). Preventing relapse in psychotic illness: a psychological approach to early intervention. Journal of Mental Health, 3(4), 541-550.
Roberts JL, Clare L, Woods RT (2009). Subjective memory complaints and awareness of memory functioning in mild cognitive impairment: a systematic review.
Dement Geriatr Cogn Disord,
28(2), 95-109.
Abstract:
Subjective memory complaints and awareness of memory functioning in mild cognitive impairment: a systematic review.
OBJECTIVES: Subjective memory complaint (SMC) is central to the diagnosis of mild cognitive impairment (MCI). People with MCI are at a higher risk of progressing to dementia, and research on SMC is contradictory in terms of the accuracy of SMC and its predictive role for future dementia. One possible reason for these contradictory findings is that the level of awareness of memory function may vary among people with MCI. This review examines whether the level of awareness of memory functioning varies amongst people classified as having MCI and whether there is support for the suggestion that the level of awareness in MCI predicts future progression to dementia. METHOD: Sixteen studies were identified which evaluate the awareness level in people classified as having MCI in either a clinical or research setting. In addition to the outcome of each study, the conceptualization of awareness, 'object' of awareness and methodology were also considered. RESULTS: There is evidence to show that the level of awareness in MCI does vary, and this may have implications for future progression to dementia. CONCLUSIONS: Given the increased risk of progression to dementia for those identified as having MCI, the role of awareness should be explored further with due consideration given to the conceptualization of awareness and the methodology employed. The finding of variability in awareness has implications for the use of SMC in the diagnostic criteria for MCI.
Abstract.
Author URL.
Nelis S, Martyr A, Clare L, Roberts J, Markova I, Morris R, Roth I, Woods R (2009). THE POTENTIAL UTILITY OF VIGNETTES AS AN INDIRECT MEASURE OF AWARENESS IN EARLY STAGE DEMENTIA.
GERONTOLOGIST,
49, 398-398.
Author URL.
Roberts J, Clare L, Nelis S, Martyr A (2009). THE RELIABILITY OF SELF REPORTED FUNCTIONAL ABILITY IN MILD COGNITIVE IMPAIRMENT.
GERONTOLOGIST,
49, 395-395.
Author URL.
Vidovich MR, Lautenschlager NT, Flicker L, Clare L, Almeida OP (2009). The PACE Study: a randomised clinical trial of cognitive activity (CA) for older adults with mild cognitive impairment (MCI).
Trials,
10Abstract:
The PACE Study: a randomised clinical trial of cognitive activity (CA) for older adults with mild cognitive impairment (MCI)
Background: Research evidence from observational studies suggests that cognitive activity reduces the risk of cognitive impairment in later life as well as the rate of cognitive decline of people with dementia. The Promoting Healthy Ageing with Cognitive Exercise (PACE) study has been designed to determine whether a cognitive activity intervention decreases the rate of cognitive decline amongst older adults with mild cognitive impairment (MCI).Methods/Design: the study will recruit 160 community-dwelling men and women aged 65 years of age or over with mild cognitive impairment (MCI). Participants will be randomly allocated to two treatment groups: non-specific education and cognitive activity. The intervention will consist of ten 90-minute sessions delivered twice per week over a period of five weeks. The primary outcome measure of the study is the change from baseline in the total score on the Cambridge Cognitive Score (CAMCOG). Secondary outcomes of interest include changes in memory, attention, executive functions, mood and quality of life. Primary endpoints will be collected 12, 52 and 104 weeks after the baseline assessment.Discussion: the proposed project will produce the best available evidence on the merits of increased cognitive activity as a strategy to prevent cognitive decline among older adults with MCI. We anticipate that the results of this study will have implications for the development of evidence-based preventive strategies to reduce the rate of cognitive decline amongst older people at risk of dementia.Trial registration: ACTRN12608000556347. © 2009 Vidovich et al; licensee BioMed Central Ltd.
Abstract.
Quinn C, Clare L, Woods B (2009). The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: a systematic review.
Aging Ment Health,
13(2), 143-154.
Abstract:
The impact of the quality of relationship on the experiences and wellbeing of caregivers of people with dementia: a systematic review.
BACKGROUND: Relatively little attention has been given to the effects of caregiving context on the experience of family members providing care for a person with dementia. This review aims to examine the impact of caregiving on the quality of the relationship between caregiver and care-recipient and the impact of the quality of the relationship between the caregiver and care-recipient on the caregiver's and care-recipient's wellbeing. METHODS: This was a systematic review. Fifteen quantitative studies were identified that examined the quality of the relationship between caregivers and care-recipients who had dementia, meeting the criterion of using a measure of relationship quality beyond a single item. RESULTS: the findings show that caregiving can have an impact on the quality of the relationship between caregiver and care-recipient. In addition, pre-caregiving and current relationship quality appear to have an impact on caregiver's wellbeing. The care-recipient's needs for help with activities of daily living and level of behavioural problems were found to influence the caregiver's perceptions of relationship quality. CONCLUSIONS: Future research should examine both current and pre-caregiving relationship quality. A better understanding of the role of relationship quality in determining the outcomes of caregiving will aid the development of more effective interventions for caregivers.
Abstract.
Author URL.
Martyr A, Nelis S, Clare L, Markova I, Morris R, Roth I, Woods R (2009). UTILISING THE EMOTIONAL STROOP TASK TO INVESTIGATE IMPLICIT AWARENESS OF MEMORY DIFFICULTIES IN PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS.
GERONTOLOGIST,
49, 395-395.
Author URL.
Clare L, Rowlands J, Bruce E, Surr C, Downs M (2008). 'I don't do like I used to do': a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care.
Soc Sci Med,
66(11), 2366-2377.
Abstract:
'I don't do like I used to do': a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care.
While awareness among people with mild to moderate dementia residing in the community has been extensively studied, little evidence has been presented regarding the extent to which people with moderate to severe dementia living in residential care show awareness of their own situation and functioning. The present study aimed to explore how differing degrees of awareness are manifested in the conversations and interactions of people with dementia living in residential care settings, and to identify theoretical and practical implications. Transcripts of 304 conversations with 80 individuals with dementia living in residential care homes in England and Wales were analysed using a grounded theory approach. All 80 participants demonstrated a degree of retained awareness, and there was considerable evidence of retained awareness throughout the conversations, expressed in relation to the three domains of self, relationship, and the environmental context. Two-thirds of participants also demonstrated at least one instance of unawareness, although demonstrations of retained awareness outweighed indications of unawareness. Unawareness was evident in relation to appraisal of functioning and the meaning ascribed to the situation. A grounded theory model of awareness in people with moderate to severe dementia who still communicate verbally proposes that demonstration of awareness involves a set of analytic and behavioural processes, a scope or timescale, and a focus. Awareness is demonstrated in relation to a given focus and scope through the involvement of cognitive processes of varying degrees of complexity, ranging from registering through appraising and interpreting to reflection. Unawareness may be demonstrated in relation to some elements of process, focus or scope, while other aspects remain unaffected. Understanding more about the capacity for retained awareness and the specific ways in which awareness can be compromised may assist care staff in responding effectively to residents' needs.
Abstract.
Author URL.
Roberts J, Clare L (2008). AWARENESS IN MILD COGNITIVE IMPAIRMENT: a REVIEW OF THE LITERATURE.
GERONTOLOGIST,
48, 349-349.
Author URL.
Nelis S, Clare L, Martyr A, Markova I, Morris R, Roth I, Woods R, Roth I (2008). AWARENESS OF FUNCTIONAL DEFICITS IN DEMENTIA: SELF VS. INFORMANT RATINGS.
GERONTOLOGIST,
48, 121-121.
Author URL.
Naylor E, Clare L (2008). Awareness of memory functioning, autobiographical memory and identity in early-stage dementia.
Neuropsychol Rehabil,
18(5-6), 590-606.
Abstract:
Awareness of memory functioning, autobiographical memory and identity in early-stage dementia.
Sense of identity is thought to be closely related to autobiographical memory. Theoretical models of awareness suggest that both may also be related to level of awareness of memory functioning among people with early-stage dementia. This study explores the relationships between autobiographical memory, identity and awareness in early-stage dementia. Thirty participants with Alzheimer's disease, or vascular or mixed dementia were assessed using the Autobiographical Memory Interview, with an additional section eliciting recall for the mid-life period, the Tennessee Self-Concept Scale, and the Memory Awareness Rating Scale. Lower levels of awareness of memory functioning were associated with poorer autobiographical recall for the mid-life period and with a more positive and definite sense of identity. Reduced awareness may serve a protective function against the threats to self posed by the onset and progression of dementia.
Abstract.
Author URL.
Clare L, Zarit S (2008). BUILDING RESILIENCE IN MCI AND EARLY-STAGE DEMENTIA: INNOVATIVE APPROACHES TO INTERVENTION AND OUTCOME EVALUATION.
GERONTOLOGIST,
48, 503-503.
Author URL.
Clare L, Evans S, Parkinson C, van Paasschen J, Nelis S, Woods R, Linden D, Rugg M (2008). BUILDING RESILIENCE THROUGH INDIVIDUALISED, GOAL-ORIENTED COGNITIVE REHABILITATION IN EARLY-STAGE DEMENTIA.
GERONTOLOGIST,
48, 503-503.
Author URL.
Clare L, Rowlands JM, Quin R (2008). Collective strength: the impact of developing a shared social identity in early-stage dementia.
Dementia,
7(1), 9-30.
Abstract:
Collective strength: the impact of developing a shared social identity in early-stage dementia
Current theories of social power suggest that development of a shared social identity can create the possibility of bringing about political and attitudinal change as well as benefiting individual psychological well-being. This exploratory, qualitative, internet-based study extending over two years explored the impact of developing a shared social identity among a group of people with early-stage dementia. We investigated the experience of belonging to the self-help network Dementia Advocacy and Support International (DASNI), and its effect on self-concept and adjustment, from the perspective of DASNI members in order to understand more about the factors that promote self-help, and the effects of engaging in self-help, mutual support and advocacy in this context. Seven active members of DASNI with a dementia diagnosis volunteered to participate. Interviews were conducted via email, and Interpretative Phenomenological Analysis (IPA) was used to develop a thematic account. The challenges engendered by the onset of dementia were reflected in descriptions of loss, struggle and uncertainty. Participating in DASNI, in contrast, engendered a sense of collective strength and having something valuable to contribute, and made it possible to discover that there can be life after diagnosis. Belonging to DASNI helped to counteract the challenges to self and identity posed by developing dementia, thus significantly affecting the experience of living with dementia, and creating the possibility of effecting social change. Gradually, people in the mild to moderate stages of dementia are developing a 'voice' and rejecting the passive patient role. One important element in this process is the way in which people with dementia band together to help themselves and one another, and influence social attitudes, through mutual support and collaborative advocacy. The development of DASNI, consistent with recent theoretical developments in conceptualizing processes of social power and influence, offers significant potential for change. © 2008 Sage Publications.
Abstract.
Clare L, Jones RSP (2008). Errorless learning in the rehabilitation of memory impairment: a critical review.
Neuropsychol Rev,
18(1), 1-23.
Abstract:
Errorless learning in the rehabilitation of memory impairment: a critical review.
This review considers the origins of the errorless learning (EL) concept, its application in memory rehabilitation, the evidence for its effectiveness, and the theoretical basis for the observed findings. The evidence suggests that EL offers valuable benefits for at least some people with memory impairments when teaching certain types of tasks. However, the benefits are not evident for all groups, some findings are equivocal, and there are some limitations associated with this approach. We discuss methodological issues impacting on these mixed findings, consider which theoretical explanations might account for the findings regarding benefits and limitations of EL, and comment on the implications for rehabilitation practitioners of the current state of evidence in this area.
Abstract.
Author URL.
Downs M, Bowers B, MaloneBeach E, Clare L (2008). IMPLEMENTING EVIDENCE-BASED DEMENTIA CARE: US UK PERSPECTIVES.
GERONTOLOGIST,
48, 254-255.
Author URL.
Robinson J, Clare L, Markova I, Martyr A, Morris R, Nelis S, Roth I, Woods B (2008). SENSITIVITY TO MEMORY-RELATED WORDS IN AN EMOTIONAL STROOP TASK - a DEMONSTRATION OF IMPLICIT AWARENESS IN PEOPLE WITH DEMENTIA.
GERONTOLOGIST,
48, 123-123.
Author URL.
Clare L, Rowlands J, Bruce E, Surr C, Downs M (2008). THE EXPERIENCE OF LIVING WITH DEMENTIA IN RESIDENTIAL CARE.
GERONTOLOGIST,
48, 339-339.
Author URL.
Clare L, Rowlands J, Bruce E, Surr C, Downs M (2008). The experience of living with dementia in residential care: an interpretative phenomenological analysis.
Gerontologist,
48(6), 711-720.
Abstract:
The experience of living with dementia in residential care: an interpretative phenomenological analysis.
PURPOSE: the subjective psychological experience of people with moderate to severe dementia living in residential care is insufficiently understood. In the present study we aimed to explore the subjective experience of life with dementia in residential care from the perspective of the person with dementia, and to understand the psychological impact of being in this situation. DESIGN AND METHODS: This was an exploratory qualitative study. Eighty individuals with dementia who were living in residential care homes engaged in unstructured conversations with a researcher. We subjected the transcripts of the resultant 304 conversations to interpretative phenomenological analysis in order to develop a thematic account. RESULTS: the experience of living with dementia in residential care was fundamentally one of experiencing difficult and distressing emotions relating to loss, isolation, uncertainty, fear, and a sense of worthlessness. Participants generally tried to cope by accepting and making the best of things and affirming their past sense of self and identity, but some also expressed frustration and anger. IMPLICATIONS: Participants were able to describe aspects of their situation and their emotional response to it, grounded in a strong retained sense of self and identity. The participants' experience emphasizes the importance of improving the living situation of elders with dementia in residential care settings.
Abstract.
Author URL.
Quinn C, Clare L, Pearce A, van Dijkhuizen M (2008). The experience of providing care in the early stages of dementia: an interpretative phenomenological analysis.
Aging Ment Health,
12(6), 769-778.
Abstract:
The experience of providing care in the early stages of dementia: an interpretative phenomenological analysis.
OBJECTIVES: Despite a wealth of research on factors affecting the well-being of caregivers for people with dementia, relatively little attention has been given to the issues facing caregivers in the early stages of dementia, and few attempts have been made to explore the subjective experience of caregivers using qualitative methods. This study explores the subjective, psychological experience of spouses or partners of people with early-stage dementia. METHOD: We conducted semi-structured interviews with 34 spouses or partners of people with a diagnosis of early-stage dementia, recruited through Memory Clinics, in order to elicit the participants' understanding of, and perspective on, their situation and experience. Transcripts of the interviews were subjected to interpretative phenomenological analysis. RESULTS: Four main themes were identified, relating to difficulties in understanding the nature and meaning of the diagnosis and condition, changes in the relationship, problems and challenges, and ways of coping. Limited understanding of dementia appeared to add considerably to the difficulties faced by caregivers at a time when they were having to respond to major changes in their relationship and interactions, make significant adjustments in their lives and consider the future. CONCLUSION: This study underlines the importance of helping family members to develop a working understanding of the condition in the early stages.
Abstract.
Author URL.
Werheid K, Clare L (2007). Are faces special in Alzheimer's disease? Cognitive conceptualisation, neural correlates, and diagnostic relevance of impaired memory for faces and names.
Cortex,
43(7), 898-906.
Abstract:
Are faces special in Alzheimer's disease? Cognitive conceptualisation, neural correlates, and diagnostic relevance of impaired memory for faces and names
Memory for faces and names has increasingly become a focus of cognitive assessment and research in Alzheimer's disease (AD). This paper reviews evidence from cognitive and clinical neuroscience regarding the question of whether AD is associated with a specific deficit in face recognition, face-name association, and retrieval of semantic information and names. Cognitive approaches conceptualizing face recognition and face-name association have revealed that, compared to other types of visual stimuli, faces are "special" because of their complexity and high intraclass similarity, and because their association with proper names is arbitrary and unique. Neuroimaging has revealed that due to this particular status, face perception requires a complex interplay of highly specialized secondary visual areas located in the occipitotemporal cortex with a widely distributed system of cortical areas subserving further task-dependent processing. Our review of clinical research suggests that AD-related deficits in face recognition are primarily due to mnestic rather than perceptual deficits. Memory for previously studied or famous faces is closely related to mediotemporal and temporocortical brain regions subserving episodic and semantic memory in general, suggesting that AD-related impairments in this domain are due to neural degeneration in these areas. Despite limited specificity due to the apparent absence of a "genuine" domain-specific deficit of face memory in AD, testing memory for faces and names is useful in clinical contexts, as it provides highly sensitive indices of episodic and semantic memory performance. Therefore, clinical assessment of face memory can usefully contribute to early detection of memory deficits in prodromal and initial stages of AD, and represents a basis for further attempts at rehabilitation. Further advantages, such as ecological validity, high task comprehensibility and, in the case of novel face learning, independence from premorbid intelligence level, render measures of face recognition valuable for clinical assessment in early AD.
Abstract.
Ownsworth T, Fleming J, Strong J, Radel M, Chan W, Clare L (2007). Awareness typologies, long-term emotional adjustment and psychosocial outcomes following acquired brain injury.
Neuropsychological Rehabilitation,
17(2), 129-150.
Abstract:
Awareness typologies, long-term emotional adjustment and psychosocial outcomes following acquired brain injury
Previous research suggests considerable heterogeneity within groups of individuals identified as having low self-awareness or good self-awareness following acquired brain injury (ABI). The present study aimed to identify typologies of individuals according to neuropsychological and psychological factors related to awareness deficits and compare emotional adjustment and psychosocial outcomes at the initial assessment and 12-month follow-up. Eighty-four participants with ABI (mean time since injury = 3.9 years) were assessed on the Self-Awareness of Deficits Interview, Awareness Questionnaire, Symptom Expectancy Checklist, Marlowe-Crowne Social Desirability Scale, Hospital Anxiety Depression Scale, Sydney Psychosocial Reintegration Scale, and an error self-regulation index. A 12-month follow-up assessment of emotional adjustment and psychosocial outcomes was conducted. A hierarchical cluster analysis distinguished four awareness typologies, namely, "poor self-awareness" (n = 12), "high defensiveness" (n = 13), "high symptom reporting" (n = 15), and "good self-awareness" (n = 44). An overall comparison of outcomes indicated that the poor self-awareness and high symptom reporting typologies experienced poorer outcomes than the high defensiveness and good self-awareness typologies. The findings confirm that there are different awareness typologies and highlight the need to tailor interventions according to the nature of awareness deficits. © 2007 Psychology Press.
Abstract.
Nelis S, Quinn C, Clare L (2007). Information and support interventions for informal caregivers of people with dementia. Cochrane Database of Systematic Reviews(2).
Dunn J, Clare L (2007). Learning face-name associations in early-stage dementia: comparing the effects of errorless learning and effortful processing.
Neuropsychol Rehabil,
17(6), 735-754.
Abstract:
Learning face-name associations in early-stage dementia: comparing the effects of errorless learning and effortful processing.
Some recent studies suggest that errorless learning principles may be beneficial in memory rehabilitation for people with dementia, while others indicate that effortful processing may be more important. The present study compared the effects of four different learning techniques, varying in level of effort required and number of errors elicited, on free recall, cued recall and recognition of novel and previously known associations among people with early-stage dementia. Ten participants with a diagnosis of early-stage Alzheimer's, vascular or mixed dementia learned novel and previously familiar face-name associations with each of four techniques--vanishing cues, forward cues, target selection, and paired associate learning--in a within-subjects design. All conditions produced significant learning for both novel and familiar associations. There were no significant differences between conditions, although mean scores were slightly higher for errorful conditions. Reducing errors did not produce any benefits. Enhancing level of effort had no significant effects for familiar associations, but high-effort conditions were significantly more effective than low-effort conditions in facilitating cued recall of novel associations. The results confirm that memory rehabilitation techniques can produce significant benefits, but do not support the view that error reduction during learning facilitates greater improvement in early-stage dementia. Effort enhancement may be more important, especially when learning novel associations.
Abstract.
Author URL.
Masterson J, Druks J, Kopelman M, Clare L, Garley C, Hayes M (2007). Selective naming (and comprehension) deficits in Alzheimer's disease?.
Cortex,
43(7), 921-934.
Abstract:
Selective naming (and comprehension) deficits in Alzheimer's disease?
The study addresses the issue of the selective preservation of verbs in Alzheimer's disease (AD). Twenty three AD patients and age-matched controls named pictures of objects and actions and took part in a word-picture verification task. The results for picture naming revealed that both patients and controls were faster and produced more target responses for objects than actions. In the comprehension task, accuracy levels were comparable for nouns and verbs, but response times were longer for verbs. Although patients were more error prone and had longer latencies in both tasks than controls, the only qualitative difference in performance between the groups was in response to trials with semantically related foils in the word-picture verification task. Patients were particularly error prone in this condition. We conclude that the results do not provide support for the notion that verbs are selectively preserved in AD. They also do not provide conclusive evidence for claims that depressed naming and comprehension is (always) due to loss of semantic knowledge or inadequate access to semantic knowledge. Finally, we discuss the findings in relation to comparable investigations in patients with semantic dementia.
Abstract.
Pratt R, Clare L, Kirchner V (2006). 'It's like a revolving door syndrome': Professional perspectives on models of access to services for people with early-stage dementia.
Aging and Mental Health,
10(1), 55-62.
Abstract:
'It's like a revolving door syndrome': Professional perspectives on models of access to services for people with early-stage dementia
As the need for services for people with dementia grows, and the benefits of early intervention become clear, it has become important to understand what factors may improve access to services for people with early-stage dementia. There are a number of models of service access, and these emphasise different areas, whether individual factors, relationships, or social context. The relevance of these models to variations in service access for people with early-stage dementia, and how well they relate to professional accounts, is not well known. In this study, 30 key professionals were interviewed about access to services for people with early-stage dementia in order to explore how different models of access were reflected in their own understandings. People with early-stage dementia were thought to have a range of complex needs, but participants felt these needs remained largely unmet. When articulating the reasons why they thought needs were unmet, participants focused on the impact of the framework within which services are delivered. The findings highlight the importance of considering relationships and socio-contextual factors, such as the impact of the framework of service delivery, when attempting to understand variations in access to services. In order to improve access to services, it will be necessary to move beyond addressing individual factors relating to access, and to consider the impact of the framework for service delivery and the relationships that influence contact with services. © 2006 Taylor & Francis.
Abstract.
Ownsworth T, Clare L, Morris R (2006). An integrated biopsychosocial approach to understanding awareness deficits in Alzheimer's disease and brain injury.
Neuropsychological Rehabilitation,
16(4), 415-438.
Abstract:
An integrated biopsychosocial approach to understanding awareness deficits in Alzheimer's disease and brain injury
Considerable emphasis has been placed upon cognitive neuropsychological explanations of awareness disorders in brain injury and Alzheimer's disease (AD), with relatively few models acknowledging the role of psychosocial factors. The present paper explores clinical presentations of unawareness in brain injury and AD, reviews the evidence for the influence of psychosocial factors alongside neuropsychological changes, and considers a number of key issues that theoretical models need to address, before going on to discuss some recently-developed models that offer the potential for developing a comprehensive biopsychosocial account. Building on these developments, we present a framework designed to assist clinicians to identify the specific factors contributing to an individual's presentation of unawareness, and illustrate its application with a case example. © 2006 Psychology Press Ltd.
Abstract.
Crocker L, Clare L, Evans K (2006). Giving up or finding a solution? the experience of attempted suicide in later life.
AGING & MENTAL HEALTH,
10(6), 638-647.
Author URL.
Harman G, Clare L (2006). Illness representations and lived experience in early-stage dementia.
Qualitative Health Research,
16(4), 484-502.
Abstract:
Illness representations and lived experience in early-stage dementia
The self-regulation model of illness behavior provides a framework for understanding how threats to self from chronic illness can be managed and proposes a significant role for illness representations. This framework can assist in illuminating the experience of developing dementia but has not previously been considered in this context. The authors conducted semistructured interviews with 9 people who had a diagnosis of early-stage dementia to explore illness representations and how these related to daily lived experience, using interpretative phenomenological analysis (IPA). Two overarching themes emerged: it will get worse, reflecting an understanding of dementia; and I want to be me, reflecting a desire to maintain sense of identity. Participants faced a number of personal and interpersonal dilemmas. The authors present a preliminary model of the way in which illness representations contribute to the lived experience of early-stage dementia. © 2006 Sage Publications.
Abstract.
Clare L, Goater T, Woods B (2006). Illness representations in early-stage dementia: a preliminary investigation.
Int J Geriatr Psychiatry,
21(8), 761-767.
Abstract:
Illness representations in early-stage dementia: a preliminary investigation.
BACKGROUND: the self-regulation model of adjustment to illness suggests that individual differences in coping and responding are related to the illness representations people hold. The present study explored the feasibility of applying this concept with people with early-stage dementia. METHOD: Understanding of the illness was explored in semi-structured interviews with 22 people who had a diagnosis of mild to moderate Alzheimer's disease or mixed dementia, and a measure of mood was administered. Interview transcripts were subjected to content analysis. RESULTS: Representations covering illness identity, cause, course, cure/control and consequences were successfully elicited, but diverged from professional constructs in some important respects. Most participants regarded their difficulties as part of normal ageing, and one-third viewed their condition as stable or improving. Almost all participants described some positive coping strategies; participants who believed that nothing could be done to help were more likely to score above clinical cut-offs for depression or anxiety. CONCLUSIONS: the findings offer a preliminary insight into the nature of illness representations in early-stage dementia, and support the relevance of the self-regulation model as a basis for understanding and intervention.
Abstract.
Author URL.
Druks J, Masterson J, Kopelman M, Clare L, Rose A, Rai G (2006). Is action naming better preserved (than object naming) in Alzheimer's disease and why should we ask?.
Brain and Language,
98(3), 332-340.
Abstract:
Is action naming better preserved (than object naming) in Alzheimer's disease and why should we ask?
The present study compared object and action naming in patients with Alzheimer's dementia. We tested the hypothesis put forward in (some) previous studies that in Alzheimer's dementia the production of verbs, that is required in action naming, is better preserved than the production of nouns, that is required in object naming. The possible reason for the dissociation is that verbs are supported predominantly by frontal brain structures that may remain relatively better preserved in early Alzheimer's disease. Objects, on the other hand, are supported by temporal lobe structures that are affected early in the disease. An alternative hypothesis, which is supported by other studies, is that action naming is more impaired than object naming due to verbs being semantically more complex than nouns. In order to test these contrasting hypotheses, the present study used more stringent methodology than previous studies. We used a larger set of stimuli with carefully matched object and action items and we collected not only accuracy data but also naming latencies, a measure that is sensitive to even mild lexical retrieval problems. We compared the performance of 19 patients with mild to moderate Alzheimer's disease with that of 19 healthy age matched participants. We found that both the patients and the comparison group responded faster and made fewer errors on the object pictures than the action pictures. A qualitative analysis of the naming errors indicated that object and action naming pose different demands for the language system. The results overall suggest that the patients' performance is an exaggeration of the pattern present in the comparison participants. © 2006 Elsevier Inc. All rights reserved.
Abstract.
Clare L, Wilson BA (2006). Longitudinal assessment of awareness in early-stage Alzheimer's disease using comparable questionnaire-based and performance-based measures: a prospective one-year follow-up study.
Aging Ment Health,
10(2), 156-165.
Abstract:
Longitudinal assessment of awareness in early-stage Alzheimer's disease using comparable questionnaire-based and performance-based measures: a prospective one-year follow-up study.
Few studies of awareness in dementia have taken a longitudinal perspective, yet exploring the ways in which awareness changes over time may offer important information about the processes involved and the relationship between awareness and other variables. The present study explored in detail the patterns of change in awareness scores over time for a group of 12 participants with early-stage Alzheimer's disease using a multi-dimensional measure giving comparable participant-carer and post diction-performance discrepancy scores. There were small, non-significant increases in mean discrepancy scores for each of these components of the assessment, with similar patterns for questionnaire-based and performance-based ratings. The small changes that were observed reflected both participant and informant factors. The majority of participants showed only very minor changes; others showed changes in the direction of either reduced or increased awareness. There was no significant association between change in mean discrepancy score and change in MMSE score over time, although there was a significant decline in MMSE scores at follow-up. The observation of different longitudinal trajectories for awareness scores, reflecting increased or decreased awareness or no change, may indicate the operation of different processes affecting the expression of explicit awareness that can be understood within a biopsychosocial formulation of this complex construct.
Abstract.
Author URL.
Hardy RM, Oyebode JR, Clare L (2006). Measuring awareness in people with mild to moderate Alzheimer's disease: Development of the memory awareness rating scale-adjusted.
NEUROPSYCHOLOGICAL REHABILITATION,
16(2), 178-193.
Author URL.
Clare L, Halligan P (2006). Neuropsychological rehabilitation: Editorial. Neuropsychological Rehabilitation, 16(4), 354-355.
Clare L, Halligan P (2006). Pathologies of awareness: Bridging the gap between theory and practice.
NEUROPSYCHOLOGICAL REHABILITATION,
16(4), 353-355.
Author URL.
McCulloch Y, Clare L, Howard R, Peters E (2006). Psychological processes underlying delusional thinking in late-onset psychosis: a preliminary investigation.
International Journal of Geriatric Psychiatry,
21(8), 768-777.
Abstract:
Psychological processes underlying delusional thinking in late-onset psychosis: a preliminary investigation
Background and aims: it has been suggested that delusions may serve as a defence against negative self-representations. The present study investigated general psychological well-being and evidence for defensive emotional processes among people with late-onset psychosis. Method: the performance and responses of older people with late-onset psychosis (n =13), older people with depression (n =15), and age-matched healthy controls (n=15) were compared in a cross-sectional design. Participants rated their own levels of depression and self-esteem, and completed an emotional Stroop task to establish whether there was evidence of implicit depression in the absence of explicit acknowledgement. Participants rated themselves on a number of personal attributes in relation to two life stages to generate discrepancies in 'actual', 'ideal' and 'other' self-concepts, and completed measures of their perceptions of current and past psychological well-being. Results: People with late-onset psychosis showed no evidence of overt depression or low-self esteem. All three groups showed an attentional bias to depression-related and age-related words, although response times overall were faster for controls. The psychosis group showed no discrepancies between either their past or their current 'actual' and 'other' self-concepts, suggesting that they do not have more negative views about how others see them. Conclusions: Evidence from this study does not support the application of the 'delusion-as-defence' model to late-onset psychosis, but methodological constraints must be borne in mind when interpreting the findings. Copyright © 2006 John Wiley & Sons, Ltd.
Abstract.
Ownsworth T, Clare L (2006). The association between awareness deficits and rehabilitation outcome following acquired brain injury.
Clinical Psychology Review,
26(6), 783-795.
Abstract:
The association between awareness deficits and rehabilitation outcome following acquired brain injury
The relationship between awareness of deficits and rehabilitation outcome following acquired brain injury (ABI) has yet to be established. The aim of the present review was to examine empirical evidence concerning the issue of whether awareness of deficits is necessary for rehabilitation gains and provide guidelines to assist clinical decision-making. The search strategy entailed identification of longitudinal group outcome studies with individuals who had experienced ABI of varying aetiology published between 1980 and 2006 in which awareness of deficits was systematically measured from the outset of rehabilitation and examined in relation to post-intervention functional outcomes. Eligible studies were evaluated against indicators of methodological quality. The review yielded 12 empirical studies, of which four indicated that individuals with greater awareness of deficits achieve more favorable rehabilitation outcomes and six provided partial support for this association. Two studies failed to support this view. Overall, the key issues requiring consideration when forming opinions and developing interventions for individuals with awareness deficits include the following: (a) how awareness is conceptualized and determined; (b) the perceived impact of poor self-awareness and possible adverse effects of targeting awareness; (c) biopsychosocial factors underlying awareness deficits; (d) the clients' goals and expectations in the intervention; and (e) the scope, intensity and resources of the rehabilitation context. Clinical recommendations are made regarding the circumstances in which it might be optimal to target the development of awareness in the context of rehabilitation. © 2006 Elsevier Ltd. All rights reserved.
Abstract.
Fioravanti M, Carlone O, Vitale B, Cinti ME, Clare L (2005). A meta-analysis of cognitive deficits in adults with a diagnosis of schizophrenia.
Neuropsychology Review,
15(2), 73-95.
Abstract:
A meta-analysis of cognitive deficits in adults with a diagnosis of schizophrenia
This review identified 1275 studies examining cognitive deficits in people with schizophrenia, published between 1990 and 2003. Data from 113 studies (4365 patients and 3429 controls) were combined in a meta-analysis carried out on the five cognitive domains of IQ, memory, language, executive function, and attention. Studies were excluded where they lacked a suitable control group or failed to present complete information. In all five cognitive domains, analysis indicated a consistent trend for patients to perform more poorly than healthy controls, with significant heterogeneity across studies. Sources of heterogeneity were analyzed and a need to ensure more appropriate composition of patient and control groups and to adopt a more refined and methodologically correct, hypothesis-driven approach was identified. © 2005 Springer Science+Business Media, Inc.
Abstract.
Pariente J, Cole S, Henson R, Clare L, Kennedy A, Rossor M, Cipoloti L, Puel M, Demonet JF, Chollet F, et al (2005). Alzheimer's patients engage an alternative network during a memory task.
Annals of Neurology,
58(6), 870-879.
Abstract:
Alzheimer's patients engage an alternative network during a memory task
We conducted an event-related functional magnetic resonance imaging experiment to better understand the potentially compensatory alternative brain networks activated by a clinically relevant face-name association task in Alzheimer's disease (AD) patients and matched control subjects. We recruited 17 healthy subjects and 12 AD patients at an early stage of the disease. They underwent functional magnetic resonance imaging scanning in four sessions. Each of the sessions combined a "study" phase and a "test" phase. Face/name pairs were presented in each study phase, and subjects were asked to associate faces with names. In the test phase, a recognition task, faces seen in the study phase were presented each with four different names. The task required selection of appropriate previously associated names from the study phase. Responses were recorded for post hoc classification into those successfully or unsuccessfully encoded. There were significant differences between the groups in accuracy and reaction time. Comparison of correctly versus incorrectly encoded and recognized pairs in the two groups indicated bilateral hippocampal hypoactivation both when encoding and recognizing in the AD group. Moreover, patients showed bilateral hyperactivation of parts of the parietal and frontal lobes. We discuss whether hyperactivation of a frontoparietal network reflects compensatory strategies for failing associative memory in AD patients. © 2005 American Neurological Association.
Abstract.
Clare L, Marková I, Verhey F, Kenny G (2005). Awareness in dementia: a review of assessment methods and measures.
Aging Ment Health,
9(5), 394-413.
Abstract:
Awareness in dementia: a review of assessment methods and measures.
A comprehensive range of literature on awareness in dementia published in peer-reviewed journals during the last 15 years was reviewed with the aim of extracting details of the methods and measurement instruments adopted for the purposes of assessing awareness. Assessment approaches fell into five categories: clinician rating methods, questionnaire-based methods, performance-based methods, phenomenological methods, and multidimensional or combined methods. Ranges of objects of awareness assessment were identified both within and across domains. Strengths and limitations of methods in each category were identified. Reasons for the inconclusive findings from research using the methods described here were considered, and suggestions for future directions were made.
Abstract.
Author URL.
Aalten P, Van Valen E, Clare L, Kenny G, Verhey F (2005). Awareness in dementia: a review of clinical correlates.
Aging and Mental Health,
9(5), 414-422.
Abstract:
Awareness in dementia: a review of clinical correlates
This article provides a review of the literature on clinical correlates of awareness in dementia. Most inconsistencies were found with regard to an association between depression and higher levels of awareness. Dysthymia, but not major depression, is probably related to higher levels of awareness. Anxiety also appears to be related to higher levels of awareness. Apathy and psychosis are frequently present in patients with less awareness, and may share common neuropathological substrates with awareness. Furthermore, unawareness seems to be related to difficulties in daily life functioning, increased caregiver burden, and deterioration in global dementia severity. Factors that may be of influence on the inconclusive data are discussed, as are future directions of research. © 2005 Taylor & Francis Group Ltd.
Abstract.
Markova IS, Clare L, Wang M, Romero B, Kenny G (2005). Awareness in dementia: Conceptual issues.
AGING & MENTAL HEALTH,
9(5), 386-393.
Author URL.
Clare L, Woods B (2005). Awareness in dementia: a subject for scrutiny.
Aging Ment Health,
9(5), 384-385.
Author URL.
Clare L (2005). Cognitive rehabilitation for people with early-stage dementia.
INTERNATIONAL PSYCHOGERIATRICS,
17, 70-71.
Author URL.
Shakespeare P, Clare L (2005). Focusing on task-oriented talk as a way of exploring the interaction between people with early-onset dementia and their carers. Qualitative Research in Psychology, 2(4), 327-340.
Freeman E, Clare L, Savitch N, Royan L, Litherland R, Lindsay M (2005). Improving website accessibility for people with early-stage dementia: a preliminary investigation.
Aging and Mental Health,
9(5), 442-448.
Abstract:
Improving website accessibility for people with early-stage dementia: a preliminary investigation
This study, conducted collaboratively with five men who have a diagnosis of early-stage Alzheimer's disease (AD), is the first stage of a formative research project aimed at developing a new website for people with dementia. Recommendations derived from a literature review of the implications of dementia-related cognitive changes for website design were combined with general web accessibility guidelines to provide a basis for the initial design of a new website. This website was compared with an equivalent site, containing the same information but based on an existing design, in terms of accessibility, ease of use, and user satisfaction. Participants were very satisfied with both sites, but responses did indicate some specific areas where one site was preferred over another. Observational data highlighted significant strengths of the new site as well as some limitations, and resulted in clear recommendations for enhancing the design. In particular, the study suggested that limiting the size of web pages to the amount of information that can be displayed on a computer screen at any one time could reduce the level of difficulty encountered by the participants. The results also suggested the importance of reducing cognitive load through limiting the number of choices required at any one time, the very opposite of the ethos of much website design. © 2005 Taylor & Francis Group Ltd.
Abstract.
Robinson L, Clare L, Evans K (2005). Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples.
Aging and Mental Health,
9(4), 337-347.
Abstract:
Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples
The current emphasis on early detection and disclosure of a diagnosis of dementia highlights the need to examine couples' shared constructions of, and responses to, the diagnosis, and to explore the appraisals that couples make about the illness at an early stage. While the experiences of carers and of people with dementia have mostly been considered separately, further investigation of the shared experience of couples where one partner is developing dementia is required. This study adopted a family systems perspective to investigate psychological reactions to a diagnosis of dementia in nine couples where one partner had received a diagnosis of either Alzheimer's disease or vascular dementia, with particular emphasis on the possible relevance of psychological responses to loss. Interpretative phenomenological analysis was used to explore participants' experiences of receiving a diagnosis of dementia, which were compared and contrasted across couples. Ten themes were subsumed under two higher-order themes, 'Not quite the same person, tell me what actually is wrong' and 'Everything's changed, we have to go from there', and linked through the overarching theme of 'Making sense and adjusting to loss'. A model is presented that encapsulates the oscillating processes couples appeared to go through in making sense of the experience of early-stage dementia and adjusting to the losses and difficulties evoked by the illness, which appeared to be similar to the process of adjustment outlined in dual-process models of grief. The findings suggest that couples who receive a diagnosis of dementia may be supported by helping them to create a joint construction that enables them to make sense of their situation, find ways of adjusting to the changes experienced in their roles and identity, and manage the losses they face in the early stages of dementia. © 2005 Taylor & Francis Group Ltd.
Abstract.
Clare L (2005). Psychosocial interventions for people with dementia.
INTERNATIONAL PSYCHOGERIATRICS,
17, 38-38.
Author URL.
Seiffer A, Clare L, Harvey R (2005). The role of personality and coping style in relation to awareness of current functioning in early-stage dementia.
AGING & MENTAL HEALTH,
9(6), 535-541.
Author URL.
Downs M, Clare L, Mackenzie J (2005). Understandings of dementia and their implications for therapeutic effort.
INTERNATIONAL PSYCHOGERIATRICS,
17, 39-39.
Author URL.
Clare L (2004). Awareness in early-stage Alzheimer's disease: a review of methods and evidence.
British Journal of Clinical Psychology,
43(2), 177-196.
Abstract:
Awareness in early-stage Alzheimer's disease: a review of methods and evidence
Purpose. This review has three main aims: (1) to illustrate the strengths and limitations of current approaches to assessing awareness of difficulties and impairments in people with early-stage Alzheimer's disease (AD). (2) to consider the evidence regarding factors associated with level of awareness. (3) to highlight the implications for assessment and intervention. Methods. A comprehensive range of literature on awareness in AD published in the past 20 years is critically reviewed. Results. Four main approaches to the assessment of awareness can be discerned, each with significant conceptual and methodological limitations. These limitations affect the quality of the available evidence regarding factors associated with level of awareness, which is contradictory, with few clear findings emerging. Awareness does, however, appear to be related to the outcome of rehabilitation, and this has important implications for the selection of appropriate and sensitive interventions. Conclusions. The review highlights the need for a broad conceptualization of awareness. Greater clarity about theoretical frameworks, and improved assessment methods, are required in order to enhance understanding of variations in awareness in early-stage AD. Awareness is an important variable for clinicians to consider. © 2004 the British Psychological Society.
Abstract.
Clare L (2004). Awareness in early-stage Alzheimer's disease: a review of methods and evidence.
Br J Clin Psychol,
43(Pt 2), 177-196.
Abstract:
Awareness in early-stage Alzheimer's disease: a review of methods and evidence.
PURPOSE: This review has three main aims: (1) to illustrate the strengths and limitations of current approaches to assessing awareness of difficulties and impairments in people with early-stage Alzheimer's disease (AD). (2) to consider the evidence regarding factors associated with level of awareness. (3) to highlight the implications for assessment and intervention. METHODS: a comprehensive range of literature on awareness in AD published in the past 20 years is critically reviewed. RESULTS: Four main approaches to the assessment of awareness can be discerned, each with significant conceptual and methodological limitations. These limitations affect the quality of the available evidence regarding factors associated with level of awareness, which is contradictory, with few clear findings emerging. Awareness does, however, appear to be related to the outcome of rehabilitation, and this has important implications for the selection of appropriate and sensitive interventions. CONCLUSIONS: the review highlights the need for a broad conceptualization of awareness. Greater clarity about theoretical frameworks, and improved assessment methods, are required in order to enhance understanding of variations in awareness in early-stage AD. Awareness is an important variable for clinicians to consider.
Abstract.
Author URL.
Clare L, Wilson BA, Carter G, Roth I, Hodges JR (2004). Awareness in early-stage Alzheimer's disease: relationship to outcome of cognitive rehabilitation.
J Clin Exp Neuropsychol,
26(2), 215-226.
Abstract:
Awareness in early-stage Alzheimer's disease: relationship to outcome of cognitive rehabilitation.
Awareness of difficulties may have an important impact on functioning and response to intervention in early-stage Alzheimer's disease (AD). Clinical reports and retrospective studies suggest an association, but this has not previously been tested in a prospective study. Using a new measure of awareness, the Memory Awareness Rating Scale (MARS), which was designed to take account of methodological limitations identified in a review of previous studies, the present study explored the relationship between awareness of difficulties and outcome of a cognitive rehabilitation (CR) intervention in 12 participants with a diagnosis of early-stage Alzheimer's disease. The relationship between awareness and mood, behaviour and executive function was also assessed. The results provide the first demonstration in a prospective study that higher levels of awareness are related to better CR outcomes. Awareness was associated with depression and reported behaviour problems, but not with performance on tests of executive function. These results suggest that variations in level of awareness in early-stage AD are influenced by psychological factors, and that explanatory models need to take these factors into account. Awareness of difficulties may serve as a useful predictor of the likely effectiveness of CR, andthis may assist clinicians in selecting appropriate interventions for individuals with early-stage AD.
Abstract.
Author URL.
Clare L, Romero B, Wenz M (2004). Awareness in early-stage dementia: Understanding, assessment and implications for early intervention: Report on a European project.
Zeitschrift fur Gerontopsychologie und -psychiatrie,
17(2), 135-138.
Abstract:
Awareness in early-stage dementia: Understanding, assessment and implications for early intervention: Report on a European project
This paper reports on a European project on awareness in early-stage dementia. This two-year project (2003-2004) will review the current state of knowledge in this area and bring together people with dementia, family carers, clinicians and researchers for wide-ranging discussion of the relevant issues and concepts and the implications these may have for care and support. A meeting of the AWARE project held in Cambridge in May 2003 highlighted the importance of considering the perspectives of people with dementia and caregivers and taking account of the complex range of factors influencing awareness.
Abstract.
Clare L, Woods RT (2004). Cognitive training and cognitive rehabilitation for people with early-stage Alzheimer's disease: a review.
Neuropsychological Rehabilitation,
14(4), 385-401.
Abstract:
Cognitive training and cognitive rehabilitation for people with early-stage Alzheimer's disease: a review
Memory difficulties are a defining feature of Alzheimer's disease (AD), with significant implications for people with AD and family members. Interventions aimed at helping with memory difficulties, therefore, may be important in reducing excess disability and improving well-being. There is a long tradition of cognition-focused intervention in dementia care. In this review we offer broad definitions and descriptions of three approaches to cognition-focused intervention for people with dementia - cognitive stimulation, cognitive training and cognitive rehabilitation - and attempt to clarify the underlying concepts and assumptions associated with each. Cognitive training and cognitive rehabilitation are the main approaches used with people who have early-stage AD. We review a range of studies describing the implementation of these two approaches, and evaluate the evidence for their effectiveness. With regard to cognitive training, the evidence currently available does not provide a strong demonstration of efficacy, but findings must be viewed with caution due to methodological limitations. It is not possible at present to draw firm conclusions about the efficacy of individualised cognitive rehabilitation interventions for people with early-stage dementia, due to the lack of any randomised controlled trials (RCTs) in this area, although indications from single-case designs and small group studies are cautiously positive. Further research is required that takes account of the conceptual and methodological issues outlined here. © 2004 Psychology Press Ltd.
Abstract.
Harborne A, Wolpert M, Clare L (2004). Making sense of ADHD: a battle for understanding? Parents' views of their children being diagnosed with ADHD.
Clinical Child Psychology and Psychiatry,
9(3), 327-339.
Abstract:
Making sense of ADHD: a battle for understanding? Parents' views of their children being diagnosed with ADHD
Much of the extensive body of research into attention deficit hyperactivity disorder (ADHD) has concentrated on understanding the aetiology of the disorder. This research has generated a number of very different conceptualizations of ADHD, ranging from purely medical descriptions to theories that incorporate a range of social and psychological factors. Although a large amount of research has been undertaken in this area, little is known about the Individual experiences of those directly affected by the disorder and, in particular, how parents make sense of the variety of different aetiological models. The aim of this study was to investigate this issue. The mothers of nine boys, aged between 8 and 11 years, agreed to participate in the study. One father also participated. In-depth interviews, following a semistructured format, were held with each participant. Interviews were transcribed verbatim and analysed using a grounded theory approach. Data analysis revealed that the key issue for parents was the discrepancy in the way in which parents understood the causes of ADHD, as compared with the ways in which others viewed the disorder. Parents reported that they believed ADHD to be a biologically based disorder, but that they felt others considered the disorder to be related to psychological and social factors. The implications of these differing perspectives were as follows: (i) parents battled with professionals and family members to encourage them to share their views of the condition; (ii) parents fell blamed by professionals and family members for their sons' difficulties; and (iii) parents reported experiencing significant emotional distress as a result of the differing views.
Abstract.
Clare L, Wilson BA (2004). Memory rehabilitation techniques for people with early-stage dementia.
Zeitschrift fur Gerontopsychologie und -psychiatrie,
17(2), 109-117.
Abstract:
Memory rehabilitation techniques for people with early-stage dementia
Errorless learning (EL) can be supported through a variety of specific learning methods, which may vary along other parameters including for example the degree of effortful processing required. In memory rehabilitation for people with early-stage Alzheimer's disease (AD), achieving the optimal balance between elimination of errors and active, effortful processing during learning is likely to be critical. This paper describes a comparison of four different errorless methods in a single case experimental design. The participant, who had a diagnosis of early-stage AD, attempted to relearn forgotten face-name associations using one of four methods: Spaced retrieval, mnemonic elaboration, cueing with increasing assistance, and cueing with decreasing assistance. Best results were achieved in the mnemonic and cueing with increasing assistance conditions, while cueing with decreasing assistance produced the least learning. It is suggested that, within an errorless learning paradigm, strategies requiring more effortful processing may produce superior gains compared to strategies relying on implicit or passive processing. This has important implications for clinical rehabilitation interventions for people with early-stage dementia.
Abstract.
Giblin S, Clare L, Livingston G, Howard R (2004). Psychosocial correlates of late-onset psychosis: life experiences, cognitive schemas, and attitudes to ageing.
INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY,
19(7), 611-623.
Author URL.
Clare L (2004). The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models.
British Journal of Clinical Psychology,
43(2), 155-175.
Abstract:
The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models
Objectives. This review considers the concepts and models that, often implicitly, underlie accounts and studies of variations in awareness of difficulties in people with early-stage Alzheimer's disease (AD). In order to do this, it is necessary to draw on explanations presented within the discourses of different disciplines. The review aims to explore the key tensions and debates that arise in attempting to conceptualize awareness, and attempts to specify what kind of conceptual framework is needed in order to advance our understanding of variations in awareness in AD. Methods. A range of literature relating to concepts and models of awareness, drawn from different disciplines and published during the past 30 years, is critically reviewed. Results. The literatures of different disciplines present varying constructions of the concept of awareness. Neuropsychological, psychiatric and psychosocial explanations are considered and their relevance to understanding awareness in early-stage AD is discussed. Conclusions. An understanding of variations in awareness in early-stage AD requires a biopsychosocial model of awareness that incorporates the influence of both neuropsychological impairments and psychosocial responses. Improved understanding of variations in awareness is essential for the development of person-centred approaches to intervention and care in AD. © 2004 the British Psychological Society.
Abstract.
Clare L (2004). The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models.
Br J Clin Psychol,
43(Pt 2), 155-175.
Abstract:
The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models.
OBJECTIVES: This review considers the concepts and models that, often implicitly, underlie accounts and studies of variations in awareness of difficulties in people with early-stage Alzheimer's disease (AD). In order to do this, it is necessary to draw on explanations presented within the discourses of different disciplines. The review aims to explore the key tensions and debates that arise in attempting to conceptualize awareness, and attempts to specify what kind of conceptual framework is needed in order to advance our understanding of variations in awareness in AD. METHODS: a range of literature relating to concepts and models of awareness, drawn from different disciplines and published during the past 30 years, is critically reviewed. RESULTS: the literatures of different disciplines present varying constructions of the concept of awareness. Neuropsychological, psychiatric and psychosocial explanations are considered and their relevance to understanding awareness in early-stage AD is discussed. CONCLUSIONS: an understanding of variations in awareness in early-stage AD requires a biopsychosocial model of awareness that incorporates the influence of both neuropsychological impairments and psychosocial responses. Improved understanding of variations in awareness is essential for the development of person-centred approaches to intervention and care in AD.
Abstract.
Author URL.
Alexander N, Clare L (2004). You still feel different: the experience and meaning of women's self-injury in the context of a lesbian or bisexual identity.
Journal of Community and Applied Social Psychology,
14(2), 70-84.
Abstract:
You still feel different: the experience and meaning of women's self-injury in the context of a lesbian or bisexual identity
This article reports an intensive qualitative study of the subjective experience and meaning of self-injury for 16 women who identified as lesbian or bisexual and who had deliberately self-injured on repeated occasions. In individual interviews, the women talked about their experiences of self-injury and the role it played in their lives as lesbian or bisexual women. Interpretative Phenomenological Analysis (IPA) was used to elicit themes arising within their accounts. These highlighted a number of ways in which social and contextual factors contributed to the development of self-injury. Although many of these factors seemed applicable to any woman who self-injures, there were some aspects that were specific to the experience of lesbian and bisexual women. In addition, the women's accounts raised a number of important issues about the way in which mental health services respond to lesbian and bisexual women who self-injure. It is argued that self-injury can be understood as a coping response that arises within a social context characterized by abuse, invalidation, and the experience of being regarded as different or in some way unacceptable. These factors are especially salient in the lives of women, and they emerge particularly strongly as part of the experience of women who are developing a lesbian or bisexual identity. Copyright © 2004 John Wiley & Sons, Ltd.
Abstract.
Clare L (2003). 'I'm still me': Living with the onset of dementia. Journal of Dementia Care, 11(2), 32-35.
Clare L, Baddeley A, Moniz-Cook E, Woods B (2003). A quiet revolution.
PSYCHOLOGIST,
16(5), 250-254.
Author URL.
Clare L, Woods RT, Moniz Cook ED, Orrell M, Spector A (2003). Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia.
Cochrane Database Syst Rev(4).
Abstract:
Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia.
BACKGROUND: Memory problems are a defining feature of the early stages of Alzheimer's disease (AD) and vascular dementia. Cognitive training and cognitive rehabilitation are specific approaches designed to address everyday memory difficulties. OBJECTIVES: the main aim was to evaluate the effectiveness and impact of cognitive training and cognitive rehabilitation interventions aimed at improving memory functioning for people in the early stages of Alzheimer's disease or vascular dementia. The two types of intervention were considered separately. SEARCH STRATEGY: the CDCIG Specialized Register, which contains records from MEDLINE, EMBASE, CINAHL, PsycINFO and many other databases, was searched on 9 April 2003. SELECTION CRITERIA: RCTs comparing cognitive rehabilitation or cognitive training interventions with comparison conditions, and reporting outcomes for the person with dementia and/or the family caregiver, were considered for inclusion. DATA COLLECTION AND ANALYSIS: Six studies reporting cognitive training interventions were included. Statistical analyses were conducted to provide an indication of intervention effect sizes. Data from ordinal scales was treated as continuous, and a fixed effects model was applied in calculating weighted mean differences and 95% confidence intervals. No studies were found that reported a fully individualised cognitive rehabilitation approach. MAIN RESULTS: None of the six studies reporting cognitive training interventions demonstrated any statistically significant effects in any domain, although there were indications of some modest, non-significant effects in various domains of cognitive functioning. REVIEWER'S CONCLUSIONS: the present findings do not provide strong support for the use of cognitive training interventions for people with early-stage AD or vascular dementia, although these findings must be viewed with caution due to the limited number of RCTs available and to the methodological limitations identified, and further well-designed trials would help to provide more definitive evidence. Due to a complete absence of RCTs evaluating an individualised cognitive rehabilitation approach, it is not possible at present to draw conclusions about the efficacy of individualised cognitive rehabilitation interventions for people with early-stage dementia, and further research is required in this area.
Abstract.
Author URL.
Clare L, Wilson BA, Carter G, Hodges JR (2003). Cognitive rehabilitation as a component of early intervention in Alzheimer's disease: a single case study.
Aging Ment Health,
7(1), 15-21.
Abstract:
Cognitive rehabilitation as a component of early intervention in Alzheimer's disease: a single case study.
Early intervention in Alzheimer's disease (AD) should focus on psychological and social needs as well as the provision of medication. One possible component of early intervention programmes for people with early-stage AD is cognitive rehabilitation aimed at fostering the development of strategies for coping with memory problems. The likely relevance of cognitive rehabilitation in early-stage AD is supported by neuropsychological and experimental learning studies, but further work is required to develop clinically relevant interventions, which can be applied in the real-life setting. This paper presents a single case intervention study in which a 66-year-old man with early-stage AD learned the names of 13 members of his support group using a mnemonic strategy coupled with either expanding rehearsal or repeated presentation, or both, within an errorless learning paradigm. Recall scores improved from a mean of 2.31% at initial baseline to 91.46% following intervention, and gains were largely maintained at follow-up. There was no evidence of any increase in depression, anxiety or caregiver strain during the intervention. The results support the view that cognitive rehabilitation interventions may form a valuable component of comprehensive early intervention programmes for people with AD.
Abstract.
Author URL.
Clare L (2003). Cognitive rehabilitation in early-stage dementia.
Research and Practice in Alzheimer's Disease,
7, 97-102.
Abstract:
Cognitive rehabilitation in early-stage dementia
Cognitive rehabilitation aims to maintain activity, participation and well-being, and to reduce excess disability. Interventions are directed at optimising remaining cognitive abilities and devising ways of compensating for impairments, within a broad therapeutic context that is sensitive to emotional and psychological needs. Real-life goals identified by the person with early-stage dementia and his or her family members are tackled in individual sessions. The research summarised here contributed to the development of methods and techniques, with a particular emphasis on errorless learning. In a single case series, we demonstrated effective interventions and long-term maintenance of gains. This was replicated in a group study. We were also able to demonstrate that, for our group of participants ivith early-stage Alzheimer's disease, a higher level of explicit awareness of memory difficulties was associated with better outcome. Cognitive rehabilitation interventions of the type described here can be readily applied in the clinical setting.
Abstract.
Clare L (2003). Cognitive training and cognitive rehabilitation for people with early-stage dementia. Reviews in Clinical Gerontology, 13(1), 75-83.
Scott J, Clare L (2003). Do people with dementia benefit from psychological interventions offered on a group basis?.
Clinical Psychology and Psychotherapy,
10(3), 186-196.
Abstract:
Do people with dementia benefit from psychological interventions offered on a group basis?
Psychological interventions, whether directed at cognitive functioning or emotional expression, are frequently offered on a group basis to people with dementia. This paper aims to review the range of therapies offered and to evaluate the evidence for their effectiveness. Four categories of group therapy are identified: early approaches to enhancing well-being (reality orientation, validation and reminiscence); methods aimed at improving memory and cognition (cognitive stimulation and memory training); psychotherapy; and support. Although the review demonstrates the wide range of group work offered, and the creativity of practitioners in this area, relatively little formal evaluation has been undertaken. It is therefore difficult to reach firm conclusions regarding evidence for efficacy. There is a need for more research, and future evaluations should pay increased attention to the selection of appropriate methodologies and outcome measures, the question of clinical relevance and the issue of individual differences in response to intervention. In addition, it will be important to enable people with dementia and their family members to play a role in determining what interventions are relevant and acceptable, and what outcomes are desirable. Copyright © 2003 John Wiley & Sons, Ltd.
Abstract.
Clare L, Cox S (2003). Improving Service Approaches and Outcomes for People with Complex Needs Through Consultation and Involvement.
Disability and Society,
18(7), 935-953.
Abstract:
Improving Service Approaches and Outcomes for People with Complex Needs Through Consultation and Involvement
Services have not always catered well for people with complex needs. The term 'complex needs' is used here to signify people who have cognitive impairments and communication difficulties that present major challenges for getting one's views and preferences heard and understood, and/or who may not fit into traditional categories of service provision. Current developments in policy and practice, such as the single shared assessment process, emphasise inclusion through user involvement. There is a danger, however, that people with complex needs will be seen as too difficult to involve, and will therefore remain effectively excluded from the decision-making process and from the opportunity to influence service provision. This article explores the current situation in relation to ensuring genuine involvement for people with complex needs, highlights obstacles to progress and examples of good practice, and identifies future directions for research and practice.
Abstract.
Clare L (2003). Managing threats to self: awareness in early stage Alzheimer's disease.
Soc Sci Med,
57(6), 1017-1029.
Abstract:
Managing threats to self: awareness in early stage Alzheimer's disease.
Lack of awareness is described as a clinical feature of Alzheimer's disease that is observed in a significant proportion of those assigned this diagnosis. There is an extensive literature emphasising biological explanations in which unawareness is viewed essentially as a symptom, but possible psychosocial factors, together with the socially constructed nature of expressed awareness, are largely neglected. The onset of dementia may be viewed as a threat to self occasioning attempts to regain control through a range of psychological strategies, which are likely to affect the ways in which people communicate an account of their experience and hence the extent to which they may be considered 'aware'. In the present study, 12 participants with a medical diagnosis of early stage Alzheimer's disease, who were described in clinical records as ranging from 'very aware' to 'unaware' of their illness, were interviewed on two occasions. Partners were also interviewed separately on each occasion. Transcripts were analysed using Interpretative Phenomenological Analysis. In response to their memory difficulties, participants were seen as engaging in the processes of acknowledging, reacting, explaining, experiencing the emotional impact, and adjusting. All participants acknowledged memory problems, indicating a basic awareness of changes in their memory functioning, but made varying judgements about the meaning and impact of these. The resulting spectrum of responses formed a continuum running from 'self-maintaining' to 'self-adjusting'. A self-maintaining stance related to attempts to normalise the situation and minimise the difficulties, thus maintaining continuity with prior sense of self, while a self-adjusting stance related to attempts to confront the difficulties and adapt one's sense of self accordingly. A preliminary model of the construction of awareness in early stage Alzheimer's is presented that acknowledges biological mechanisms but places the main emphasis on psychosocial factors and self-concept.
Abstract.
Author URL.
Clare L, Wilson BA, Carter G, Roth I, Hodges JR (2002). Assessing awareness in early-stage Alzheimer's disease: Development and piloting of the memory awareness rating scale.
Neuropsychological Rehabilitation,
12(4), 341-362.
Abstract:
Assessing awareness in early-stage Alzheimer's disease: Development and piloting of the memory awareness rating scale
There are indications that awareness may have an important impact on functioning and response to rehabilitative interventions in early-stage Alzheimer's disease (AD), yet studies have so far produced few clear findings, and a comprehensive explanatory model is needed together with a reliable assessment method. A theory-driven approach to assessing awareness in early-stage Alzheimer's disease was used to develop the Memory Awareness Rating Scale (MARS), a measure that addresses key methodological limitations of the assessment methods adopted in existing studies. The MARS was piloted with 12 couples where one partner had a diagnosis of AD. This demonstrated that the MARS has satisfactory psychometric properties, and suggested some refinements to the scale that may improve its usefulness. Results obtained with the MARS allow further consideration of theoretical and methodological issues that arise in attempting to understand and assess awareness. The development of this rigorous method of assessing awareness of memory difficulties in early-stage AD provides a basis for further investigation of the relationship between awareness of memory difficulties and outcome of neuropsychological rehabilitation in early-stage AD.
Abstract.
Clare L (2002). Awareness in Dementia: New Directions:Guest Editor. Dementia, 1(3), 275-278.
Clare L, Wilson BA, Carter G, Breen K, Berrios GE, Hodges JR (2002). Depression and anxiety in memory clinic attenders and their carers: implications for evaluating the effectiveness of cognitive rehabilitation interventions.
Int J Geriatr Psychiatry,
17(10), 962-967.
Abstract:
Depression and anxiety in memory clinic attenders and their carers: implications for evaluating the effectiveness of cognitive rehabilitation interventions.
BACKGROUND: the potential of cognitive rehabilitation (CR) for people who have a diagnosis of Alzheimer's disease (AD) is increasingly being recognised. It has been suggested, however, that interventions targeting memory functioning in AD have negative effects on the well-being of participants and carers in terms of mood and perceived strain. While some 'memory training' studies do report an increase in self-report scores on scales assessing these variables, it is not clear whether the changes are attributable to the intervention. There is some overlap between CR and 'memory training', but CR is a much more individualised approach, and therefore CR intervention studies often adopt within-subjects or single case experimental designs, for which relevant comparison data are required. METHOD: Participant and carer depression and anxiety, and carer strain, were assessed at initial attendance and again by postal survey 6 months later in a consecutive series of 94 Memory Clinic referrals who received standard treatment but no specialised CR interventions. RESULTS: at the group level, there were no statistically significant changes in scores at follow up, although the participants scoring above designated cut-points were not necessarily the same individuals at the two time points. CONCLUSIONS: the study provided useful comparison data for use in evaluating the effects of cognitive rehabilitation interventions on mood and carer strain, showing that in the absence of intervention scores remain generally stable over time. Significant changes observed in intervention studies should be viewed in this context.
Abstract.
Author URL.
Clare L, Wilson BA, Carter G, Roth I, Hodges JR (2002). Relearning face-name associations in early Alzheimer's disease.
Neuropsychology,
16(4), 538-547.
Abstract:
Relearning face-name associations in early Alzheimer's disease.
Preliminary evidence for the effectiveness of cognitive rehabilitation interventions based on errorless learning principles in early-stage Alzheimer's disease (AD) was provided by Clare et al. (1999, 2000, 2001). The present study extends these findings in a controlled trial. Twelve participants meeting criteria for probable AD, with Mini-Mental State Examination scores of 18 or above, were trained in face-name associations using an errorless learning paradigm. Training produced a significant group improvement in recall of trained, but not control, items. Gains were largely maintained 6 months later, in the absence of practice. There were differences in individual response to intervention. Results did not differ according to medication status, and the intervention had no adverse effects on self-reported well-being, but participants who were more aware of their memory difficulties achieved better outcomes.
Abstract.
Author URL.
Clare L (2002). We'll fight it as long as we can: coping with the onset of Alzheimer's disease.
Aging Ment Health,
6(2), 139-148.
Abstract:
We'll fight it as long as we can: coping with the onset of Alzheimer's disease.
The onset of dementia places major demands on coping resources, and the development of adaptive coping strategies is crucial in optimizing well-being and minimizing excess disability. Understanding how people with early-stage dementia naturally attempt to adjust and cope is an important starting point in developing interventions that can enhance self-efficacy and adaptive coping. This study aimed to identify and conceptualize the coping strategies used by people with early-stage Alzheimer's disease (AD). Twelve participants with early-stage Alzheimer's and their partners were each interviewed separately on two occasions, and interpretative phenomenological analysis was used to identify themes within their accounts. The ways in which participants tried to adjust fell into two groups reflecting the same continuum, running from self-protective to integrative responding, that characterized reactions, explanations, and emotional responses. Attempts at holding on and compensating were essentially self-protective, and reflected attempts to maintain a sense of self and normality. Developing a fighting spirit and coming to terms reflected attempts to confront the threats head on, view them as a challenge, and respond in a way that balanced struggle with acceptance in order to integrate the changes within the self. Most participants described strategies in the self-protective categories, while fewer gave accounts that fell into the integrative categories. On the basis of the themes identified in the participants' accounts, key areas in which early intervention may facilitate the development of adaptive coping strategies are identified. The results provide a useful foundation for further developing interventions that can assist in enhancing well-being and self-esteem in early-stage AD.
Abstract.
Author URL.
Clare L, Woods B (2001). A role for cognitive rehabilitation in dementia care.
NEUROPSYCHOLOGICAL REHABILITATION,
11(3-4), 193-196.
Author URL.
Clare L (2001). Fit to drive? How to make a fair decision. Journal of Dementia Care, 9(5), 28-29.
Clare L, Wilson BA, Carter G, Hodges JR, Adams M (2001). Long-term maintenance of treatment gains following a cognitive rehabilitation intervention in early dementia of alzheimer type: a single case study.
Neuropsychological Rehabilitation,
11(3-4), 477-494.
Abstract:
Long-term maintenance of treatment gains following a cognitive rehabilitation intervention in early dementia of alzheimer type: a single case study
It has been suggested that "memory retraining" has no lasting effect beyond the end of the treatment session (Rabins, 1996). Although this is contradicted by cognitive rehabilitation studies showing that gains can be demonstrated and maintained, few researchers have presented long-term follow-up data. Recent studies (Clare, Wilson, Breen, & Hodges, 1999; Clare et al. 2000) have provided post-intervention follow-up data for one participant that was collected over a 9 month period, during which performance on trained face-name associations remained at ceiling levels. This paper reports a further, naturalistic follow-up of this participant over an additional period of two years, during which his recall of 10 trained face-name associations was evaluated and compared to performance on three untrained, previously-known items retained as part of the full set of stimulus materials throughout the whole study. Recall remained relatively stable over year 1 and showed a modest decline for both trained and previously-known items during year 2. Differences between year 1 and year 2 were significant only for untrained items. At the end of year 2, performance on trained items remained well above initial baseline levels. These results are discussed in the context of information derived from neuropsychological assessment, scans and self-report measures. It is argued, on the basis of the results presented here, that long-term maintenance of gains resulting from targeted cognitive rehabilitation interventions is possible, and that in view of this it will be important to evaluate the broader impact of cognitive rehabilitation interventions on quality of life and on the progression of dementia.
Abstract.
Clare L, Wilson BA, Emslie H, Tate R, Watson P (2000). Adapting the Rivermead Behavioural Memory Test Extended Version (RBMT-E) for people with restricted mobility.
Br J Clin Psychol,
39(4), 363-369.
Abstract:
Adapting the Rivermead Behavioural Memory Test Extended Version (RBMT-E) for people with restricted mobility.
OBJECTIVES: the study aimed to facilitate use of the RBMT-E with people who have impaired mobility by devising substitute tasks for the route and message subtests that do not require the individual to move around, and by presenting normative data for these substitute tasks. DESIGN: a within-subjects design was used to assess a standardization sample. Participants completed two parallel versions of the tasks in counter-balanced order in two test sessions approximately 1 week apart. METHODS: Substitute versions of the route and message subtests not requiring the individual to move around the test room were devised using commercially available materials. These were administered to participants along with other RBMT-E subtests. Scores for each version were compared for the group as a whole and for subgroups divided according to age, gender and IQ. Based on the results, profile scores were derived for each task using box plot analysis. The participants (N = 111) were part of the standardization sample for the RBMT-E and comprised consecutive series of recruits in two centres, Cambridge (UK) and Sydney (Australia). RESULTS: Normative data are presented in the form of mean scores for the group as a whole, for men and women, for people aged under 30, 30 to 50, and over 50 years, and for people with an IQ of either 90-110 or over 110. Profile score transformations for the substitute tasks are provided. CONCLUSIONS: Where mobility problems preclude the use of the route and message subtests of the RBMT-E, the 'model' tasks described here can be substituted and profile scores calculated. This allows clinicians to obtain a full spectrum of subtest scores for the RBMT-E with mobility-impaired patients, thus allowing the calculation of a total profile score.
Abstract.
Author URL.
Clare L, Wilson BA, Carter G, Breen K, Gosses A, Hodges JR (2000). Intervening with everyday memory problems in dementia of Alzheimer type: an errorless learning approach.
J Clin Exp Neuropsychol,
22(1), 132-146.
Abstract:
Intervening with everyday memory problems in dementia of Alzheimer type: an errorless learning approach.
Dementia of Alzheimer Type (DAT) is increasingly detected at an earlier stage of the disorder, when interventions to assist with everyday memory difficulties might be most valuable. Some learning is possible in DAT and a number of factors have been identified which may facilitate performance, although applications to everyday memory problems have been limited. The concept of errorless learning has not previously been directly examined in relation to DAT, but might provide a useful additional strategy. In the present study, 6 participants with early stage DAT (MMSE scores 21 - 26) received individually tailored interventions, based on errorless learning principles and targeted at a specific everyday memory problem. Five of the participants showed significant improvement on the target measures, and maintained this improvement up to 6 months later. The results suggest that it is feasible to intervene with everyday memory problems in the early stages
Abstract.
Author URL.
LEVINE B, ROBERTSON IH, CLARE L, CARTER G, HONG J, WILSON BA, DUNCAN J, STUSS DT (2000). Rehabilitation of executive functioning: an experimental–clinical. validation of Goal Management Training.
Journal of the International Neuropsychological Society,
6(3), 299-312.
Abstract:
Rehabilitation of executive functioning: an experimental–clinical. validation of Goal Management Training
Two studies assessed the effects of a training
procedure (Goal Management Training, GMT), derived from
Duncan's theory of goal neglect, on disorganized behavior
following TBI. In Study 1, patients with traumatic brain
injury (TBI) were randomly assigned to brief trials of
GMT or motor skills training. GMT, but not motor skills
training, was associated with significant gains on everyday
paper-and-pencil tasks designed to mimic tasks that are
problematic for patients with goal neglect. In Study 2,
GMT was applied in a postencephalitic patient seeking to
improve her meal-preparation abilities. Both naturalistic
observation and self-report measures revealed improved
meal preparation performance following GMT. These studies
provide both experimental and clinical support for the
efficacy of GMT toward the treatment of executive functioning
deficits that compromise independence in patients with
brain damage. (JINS, 2000, 6, 299–312.)
Abstract.
Clare L, Wilson BA, Breen K, Hodges JR (1999). Errorless learning of face-name associations in early Alzheimer's disease. Neurocase, 5(1), 37-46.
Pistrang N, Clare L, Baker C (1999). The helping process in couples during recovery from heart attack: a single case study.
British Journal of Medical Psychology,
72(2), 227-237.
Abstract:
The helping process in couples during recovery from heart attack: a single case study
This single case study aimed to illustrate help-intended communication in couples, in particular how a husband and wife attempted to help each other with adjusting to the husband's recent myocardial infarction. The study employed a semi-structured communication task to gather samples of the couple's helping interactions: the couple had two conversations in which they alternated helper and discloser roles. Quantitative and qualitative data were obtained from the couple and from expert raters (observers) about their perspectives of the conversations. The observers' ratings and verbal response mode patterns indicated that the conversations were characterized by low levels of empathy and exploration of feelings and relatively high levels of helper disclosure and advice; overall, the observers found the conversations to be somewhat unhelpful. In contrast, the couple rated the conversations more positively; the 'helpful events' they identified consisted of their partner disclosing a new piece of information and giving advice. The results were discussed in terms of the unique features of helping in close relationships.
Abstract.
Pistrang N, Clare L, Baker C (1999). The helping process in couples during recovery from heart attack: a single case study.
Br J Med Psychol,
72 ( Pt 2), 227-237.
Abstract:
The helping process in couples during recovery from heart attack: a single case study.
This single case study aimed to illustrate help-intended communication in couples, in particular how a husband and wife attempted to help each other with adjusting to the husband's recent myocardial infarction. The study employed a semi-structured communication task to gather samples of the couple's helping interactions: the couple had two conversations in which they alternated helper and discloser roles. Quantitative and qualitative data were obtained from the couple and from expert raters (observers) about their perspectives of the conversations. The observers' ratings and verbal response mode patterns indicated that the conversations were characterized by low levels of empathy and exploration of feelings and relatively high levels of helper disclosure and advice; overall, the observers found the conversations to be somewhat unhelpful. In contrast, the couple rated the conversations more positively; the 'helpful events' they identified consisted of their partner disclosing a new piece of information and giving advice. The results were discussed in terms of the unique features of helping in close relationships.
Abstract.
Author URL.
Clare L, Garnier H, Gallimore R (1998). Parents' Developmental Expectations and Child Characteristics: Longitudinal Study of Children with Developmental Delays and Their Families. American Journal on Mental Retardation, 103(2), 117-117.
Wilson BA, Clare L, Young AW, Hodges JR (1997). Knowing where and Knowing What: a Double Dissociation. Cortex, 33(3), 529-541.
Clare L, Pistrang N (1995). Parents' Perceptions of Portage: Towards a Standard Measure of Parent Satisfaction. British Journal of Learning Disabilities, 23(3), 110-117.
Clare L, McKenna PJ, Mortimer AM, Baddeley AD (1993). Memory in schizophrenia: What is impaired and what is preserved?. Neuropsychologia, 31(11), 1225-1241.
