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.

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.

BACKGROUND: Cognitive impairments affect functional ability in people with dementia. Cognitive rehabilitation (CR) is a personalised, solution-focused approach that aims to enable people with mild-to-moderate dementia to manage everyday activities and maintain as much independence as possible. OBJECTIVES: to evaluate the effects of CR on everyday functioning and other outcomes for people with mild-to-moderate dementia, and on outcomes for care partners. To identify and explore factors that may be associated with the efficacy of CR. SEARCH METHODS: We searched the Cochrane Dementia and Cognitive Improvement Group Specialised Register, which contains records from MEDLINE, EMBASE, CINAHL, PsycINFO, LILACS, and other clinical trial databases, and grey literature sources. The most recent search was completed on 19 October 2022. SELECTION CRITERIA: We included randomised controlled trials (RCTs) comparing CR with control conditions and reporting relevant outcomes for the person with dementia and/or the care partner. DATA COLLECTION AND ANALYSIS: We extracted relevant data from published manuscripts and contacted trial authors if necessary. Within each of the comparisons, we pooled data for each outcome of interest and conducted inverse-variance, random-effects meta-analyses. We evaluated the certainty of the evidence using GRADEpro GDT. MAIN RESULTS: We identified six eligible RCTs published in English between 2010 and 2022, which together included 1702 participants. The mean age of participants ranged from 76 to 80 and the proportion of male participants was between 29.4% and 79.3%. Most participants, in the studies where the type of dementia was reported, had a diagnosis of Alzheimer's disease (AD; n = 1002, 58.9% of the whole sample, 81.2% of the participants for whom the specific diagnosis was reported). Risk of bias in the individual studies was relatively low. The exception was a high risk of bias in relation to blinding of participants and practitioners, which is not usually feasible with psychosocial interventions.  Our primary outcome of everyday functioning was operationalised in the included studies as goal attainment in relation to activities targeted in the intervention. For our main comparison of CR with usual care, we pooled data for goal attainment evaluated from three perspectives (self-rating of performance, informant rating of performance, and self-rating of satisfaction with performance) at end of treatment and at medium-term follow-up (3 to 12 months). We could also pool data at these time points for 20 and 19 secondary outcomes respectively. The review findings were strongly driven by one large, high-quality RCT.  We found high-certainty evidence of large positive effects of CR on all three primary outcome perspectives at the end of treatment: participant self-ratings of goal attainment (standardised mean difference (SMD) 1.46, 95% confidence interval (CI) 1.26 to 1.66; I2 = 0%; 3 RCTs, 501 participants), informant ratings of goal attainment (SMD 1.61, 95% CI 1.01 to 2.21; I2 = 41%; 3 RCTs, 476 participants), and self-ratings of satisfaction with goal attainment (SMD 1.31, 95% CI 1.09 to 1.54; I2 = 5%; 3 RCTs, 501 participants), relative to an inactive control condition. At medium-term follow-up, we found high-certainty evidence showing a large positive effect of CR on all three primary outcome perspectives: participant self-ratings of goal attainment (SMD 1.46, 95% CI 1.25 to 1.68; I2 = 0%; 2 RCTs, 432 participants), informant ratings of goal attainment (SMD 1.25, 95% CI 0.78 to 1.72; I2 = 29%; 3 RCTs, 446 participants), and self-ratings of satisfaction with goal attainment (SMD 1.19, 95% CI 0.73 to 1.66; I2 = 28%; 2 RCTs, 432 participants), relative to an inactive control condition. For participants at the end of treatment we found high-certainty evidence showing a small positive effect of CR on self-efficacy (2 RCTs, 456 participants) and immediate recall (2 RCTs, 459 participants). For participants at medium-term follow-up we found moderate-certainty evidence showing a small positive effect of CR on auditory selective attention (2 RCTs, 386 participants), and a small negative effect on general functional ability (3 RCTs, 673 participants), and we found low-certainty evidence showing a small positive effect on sustained attention (2 RCTs, 413 participants), and a small negative effect on memory (2 RCTs, 51 participants) and anxiety (3 RCTs, 455 participants).  We found moderate- and low-certainty evidence indicating that at the end of treatment CR had negligible effects on participant anxiety, quality of life, sustained attention, memory, delayed recall, and general functional ability, and at medium-term follow-up on participant self-efficacy, depression, quality of life, immediate recall, and verbal fluency. For care partners at the end of treatment we found low-certainty evidence showing a small positive effect on environmental aspects of quality of life (3 RCTs, 465 care partners), and small negative effects of CR on level of depression (2 RCTs, 32 care partners) and on psychological wellbeing (2 RCTs, 388 care partners).  for care partners at medium-term follow-up we found high-certainty evidence showing a small positive effect of CR on social aspects of quality of life (3 RCTs, 436 care partners) and moderate-certainty evidence showing a small positive effect on psychological aspects of quality of life (3 RCTs, 437 care partners). We found moderate- and low-certainty evidence at the end of treatment that CR had negligible effects on care partners' physical health, psychological and social aspects of quality of life, and stress, and at medium-term follow-up for the physical health aspect of care partners' quality of life and psychological wellbeing. AUTHORS' CONCLUSIONS: CR is helpful in enabling people with mild or moderate dementia to improve their ability to manage the everyday activities targeted in the intervention. Confidence in these findings could be strengthened if more high-quality studies contributed to the observed effects. The available evidence suggests that CR can form a valuable part of a clinical toolkit to assist people with dementia in overcoming some of the everyday barriers imposed by cognitive and functional difficulties. Future research, including process evaluation studies, could help identify avenues to maximise CR effects and achieve wider impacts on functional ability and wellbeing.

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.

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.

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.

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.

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.

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
. 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.
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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.

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.

AbstractBackgroundPeople with dementia differ in degree of awareness of difficulties. Awareness can influence well‐being, communication and relationships, and impact on personal safety and decision‐making in everyday and clinical situations. Evaluating awareness could facilitate person‐centered care. A scoping review identified the lack of a brief, multidimensional clinical tool. We aimed to develop and test a new awareness interview for clinical use.MethodMeasure development was informed by scoping review findings, available evidence about awareness phenomena in dementia, and considerations of suitability for remote as well as in‐person administration. Some items were drawn from existing validated measures, covering awareness of functional ability, memory, and socio‐emotional functioning, and new items were developed to assess awareness of medication management and mobility, providing a profile of awareness across these domains. Scoring was based on calculation of discrepancies between self‐rating and either informant ratings or objective memory task performance, as well as self‐reported acknowledgement of specific symptoms. The interview was tested for feasibility and acceptability in a remotely‐administered pilot study. The interview was administered to 31 community‐dwelling people with mild‐to‐moderate dementia recruited in England in 2020‐2021, via telephone or Zoom video‐call. A caregiver, acting as an informant, completed a corresponding questionnaire in advance. Cognitive ability of the participant with dementia was assessed with the Montreal Cognitive Assessment‐5 minute protocol (MoCA‐5 min). Structured and open‐ended feedback was obtained from participants and caregiversResultThe interview was completed by 29 participants with MoCA‐5 min scores ranging from 9.5 to 29.Two participants with lower MoCA‐5 min scores were unable to complete the interview. Remote administration was straightforward with few challenges, taking on average under 11 minutes. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that interview questions were acceptable and understandable, but certain aspects, such as the memory task, could be somewhat upsetting as they highlighted current difficulties.ConclusionThe new Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence‐based brief clinical tool for assessing awareness in people with mild‐to‐moderate dementia. Following discussions with clinical advisory and patient and public involvement groups, a final version will be prepared for a larger validation study.

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.

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.

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.

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.

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.

&lt;b&gt;&lt;i&gt;Introduction:&lt;/i&gt;&lt;/b&gt; 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). &lt;b&gt;&lt;i&gt;Methods:&lt;/i&gt;&lt;/b&gt; 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. &lt;b&gt;&lt;i&gt;Results:&lt;/i&gt;&lt;/b&gt; 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. &lt;b&gt;&lt;i&gt;Discussion/Conclusion:&lt;/i&gt;&lt;/b&gt; 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.

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
.
. 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.
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. 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.
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. 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
. 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.
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. 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.
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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

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.

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 &lt; 0.001, η2 = 0.01), wellbeing (p &lt; 0.001, η2 = 0.02) and life satisfaction (p &lt; 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 &lt; 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.

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

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.

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
.
. 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.
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.
. 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.
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.
. 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.
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.
. 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.
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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.

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.

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.

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.

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.

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.

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.

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
. 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.

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
. 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
. 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
. 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.

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.

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.

ObjectivesThe 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/designParticipants 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.ResultsMultivariate 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.ConclusionsPeople 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.

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.

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.

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.

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.

AbstractCurrent 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 (&lt;0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

ObjectivesAssessment 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.MethodsThirty‐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.ResultsObjectively 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.ConclusionsSelf‐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 &amp; Sons, Ltd.

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 &amp; Sons, Ltd.

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.

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.

Alongside the physical symptoms associated with Parkinson’s disease dementia and dementia with Lewy bodies, health services must also address the cognitive impairments that accompany these conditions. There is growing interest in the use of nonpharmacological approaches to managing the consequences of cognitive disorder. Cognitive rehabilitation is a goal-orientated behavioural intervention which aims to enhance functional independence through the use of strategies specific to the individual’s needs and abilities. Fundamental to this therapy is a person’s capacity to set goals for rehabilitation. To date, no studies have assessed goal setting in early-stage Parkinson’s disease dementia or dementia with Lewy bodies. Semistructured interviews were carried out with 29 participants from an ongoing trial of cognitive rehabilitation for people with these conditions. Here, we examined the goal statements provided by these participants using qualitative content analysis, exploring the types and nature of the goals set. Participants’ goals reflected their motivations to learn new skills or improve performance in areas such as technology-use, self-management and orientation, medication management, and social and leisure activities. These results suggest that goal setting is achievable for these participants, provide insight into the everyday cognitive difficulties that they experience, and highlight possible domains as targets for intervention. The trial is registered withISRCTN16584442(DOI 10.1186/ISRCTN16584442 13/04/2015).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Using virtual reality (VR), we examined the barriers to and facilitators of functioning outdoors in persons with dementia (PwD) and investigated the generalizability of findings in VR to the real world. An existing town center was modeled in VR. PwD took part in both real-world and VR walks. Based on the results, the model was redesigned and then tested again. Performance on the walks improved, and potentially beneficial adaptations to outdoor environments were identified, but limitations of VR as a representation of the real world were also identified. We conclude that VR models, together with a rigorous behavioral testing method, can be a useful tool for the evaluation of outdoor environments and for identifying improvements for PwD.

This article reports the voices of 22 people with early to moderate dementia and their carers about the use of the outdoor environment. Analysis of semi-structured interviews demonstrates that people with early dementia value the outdoor environment for reasons such as exercise, fresh air, emotional well-being, the opportunity for informal encounters with neighbours and friends and the appreciation of the countryside. Conversely, not being able to go out was associated with feelings of depression. Carers reported that the impact of dementia was to decrease the frequency of outdoor activity and to limit the areas visited to those that were the most familiar. Maintaining outdoor activity is likely to be an effective measure in extending the period of good quality living and might decrease the period when intensive services are required. It should therefore be considered in planning for both residential care and community living in the future. © SAGE Publications, Inc. 2008.

Few studies have investigated how outdoor environments might disable people with dementia. The issue is rarely considered in planning and design guidelines and not at all in regulations, despite dementia being within the scope of disability discrimination legislation in the United Kingdom and other countries. This article reports a study that involved older people with mild to moderate dementias taking two walks, one in a real town centre and one in a virtual reality (VR) simulation. Adaptations were made to the VR simulation to test possible design improvements. Overall, the town centre posed relatively few problems for the 38 older people with dementia who participated, although more difficulty was evident with greater impairment. Some features of particular places were liked more than others, particularly the segregation of spaces from motor traffic. There were measurable benefits from using clear textual signs to support wayfinding and to identify objects and places in the environment. Diminished outdoor activity is likely to be experienced as a decrease in quality of life and may accelerate the progression of dementia. We conclude that older people with mild to moderate dementia should be encouraged to be active outdoors and that this can be facilitated by small environmental modifications. Some limitations of the VR technology used for the study are also reported. © 2007 Cambridge University Press.