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:
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:
Goal-setting to Promote a Healthier Lifestyle in Later Life: Qualitative Evaluation of the AgeWell Trial

© 2018 the Author(s). Published by Taylor. &. Francis. 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:
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:
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

Copyright © Cambridge University Press 2018. 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 until 7 January 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 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1-0.29) or negligible (

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:
The impact of comorbidity on the quality of life of people with dementia: findings from the IDEAL study.

Background: the aim was to investigate the comorbidity profile of people with dementia and examine the associations between severity of comorbidity, 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 comorbid 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 comorbid conditions was associated with low QoL scores, and those with severe comorbidity (≥5 conditions) showed the greatest impact on their well-being. Conclusions: Comorbidity is an important risk factor for poor QoL and health status in people with dementia. Greater recognition of the nature and impact of comorbidity is needed to inform support and interventions for people with dementia and a multidisciplinary approach to care provision is recommended.

Abstract:
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:
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:
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:
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:
How does cognitive reserve impact on the relationships between mood, rumination, and cognitive function in later life?

© 2014 Taylor and Francis. 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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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:
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.

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.

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.

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.

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.

Abstract:
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:
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:
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:
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:
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:
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:
The level of expressed emotion scale: a useful measure of expressed emotion in adolescents?

Research has suggested that self-report measures of expressed emotion (EE) may be employed as a proxy measure of environmental stress in the home. The appropriateness of the Level of Expressed Emotion scale as a measure of perceived expressed emotion was examined in a sample of adolescents. Participants were 239 male and 422 female adolescents with a mean age of 15.9 years (SD = 1.26). Principal component analysis and confirmatory factor analysis suggested a shortened thirty three item scale with three subscales, interpreted as Lack of Emotional Support, Irritability and Intrusiveness. The Intrusiveness and Irritability subscales were positively correlated with adolescents' self reports of psychological symptoms. Researchers seeking adolescents' reports of the family environment should consider the use of this shortened LEE scale.

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:
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:
Factor analyses and score validity of the family emotional involvement and criticism scale in an adolescent sample

The factor structure of the Family Emotional Involvement and Criticism Scale (FEICS) is tested in a sample of Irish adolescents. Participants were 661 adolescents with a mean age of 15.9 years (SD = 1.26). Interpretation of both the exploratory and confirmatory factor analysis of the FEICS show support for the two-factor structure of the FEICS with a Perceived Criticism scale and an Emotional Involvement scale. The reliabilities of the subscale scores at both phases were comparable. Validity analyses showed moderate to low positive correlations between the Perceived Criticism scale scores and scores on the problem areas of the Symptom Checklist-90-Revised (SCL-90-R). There were small, consistent negative correlations between the Emotional Involvement scale scores and symptom dimension scores of the SCL-90-R. It is concluded that the FEICS is a psychometrically sound instrument for assessing perceptions of perceived criticism but less so for emotional involvement in adolescents. © 2006 Sage Publications.