Understanding dementia in minority ethnic communities: The perspectives of key stakeholders interviewed as part of the IDEAL programme.

Future populations of older adults in the UK, those aged 65+, will demonstrate increased diversity in terms of their ethnic identity resultant from the ageing of the post-war migrants from India, Pakistan, Bangladesh, and the Caribbean. As a consequence, there will be an increase in the numbers of older adults from these communities living with age-related chronic diseases such as dementia. In response to these demographic changes, we need to develop a research, policy and practice agenda that is inclusive and provides evidence for the development of culturally diverse and effective models of service delivery. This requires engagement with three key stakeholder groups: (a) people with dementia; (b) their carers; and (c) the wider community. As part of the IDEAL research programme on living well with dementia, we undertook semi-structured interviews with twelve community leaders, defined as known and trusted individuals active in their respective communities, and six community members (two people living with dementia and four carers). We explored their understandings, experiences, and views of about dementia. Our analysis identified two overarching themes. The migrant lifecourse highlighted issues of not belonging, discrimination and racism. This framed our second theme, the cultural context of dementia, which addressed dementia knowledge and attitudes, service provision and service access, and how being part of a minority ethnic community made a difference to these experiences. Our study highlights how lifecourse experiences of negative hostile social and policy environments and services can be profound and long-lasting and provide a prism through which accessing dementia care is experienced. Our findings argue for the inclusion of diverse views and lifecourse experiences within the context of developing a dementia strategy for research, policy and practice that is appropriate for a multicultural and heterogenous society.

Identifying predictors of transition to a care home for people with dementia: findings from the IDEAL programme.

OBJECTIVES: This study investigates factors associated with the person with dementia and the caregiver to identify those associated with an increased risk of transition to a care home. METHOD: IDEAL data were collected at baseline and at 12- and 24-month follow-up for 1545 people with dementia and 1305 caregivers. Modified Poisson regressions with an offset for 'person years at risk' were used. Person with dementia factors explored were personal characteristics, cognition, health, self- and informant-rated functional ability, and neuropsychiatric symptoms. Caregiver factors explored were personal characteristics, stress, health, and quality of the dyadic relationship. RESULTS: A 5% people moved into care. Risk of moving into a care home was higher among people with dementia who were ≥80 years, among people with Parkinson's disease dementia or dementia with Lewy bodies, and among those without a spousal caregiver. Poorer cognition and more self-rated or informant-rated functional difficulties increased the risk of moving into care. CONCLUSION: Factors related to increased dementia severity and greater disability are the primary influences that place people with dementia at greater risk of moving into a care home. Strategies that help to maintain everyday functional ability for people with dementia could help delay people with dementia moving into care.

Evaluation of the effectiveness of three different interventions on older driver safety over a 12-month period: study protocol for a randomised controlled trial.

INTRODUCTION: The growing population of older drivers presents challenges for road safety attributed to age-related declines and increased crash fatality rates. However, enabling older people to maintain their health and independence through continued safe driving is important. This study focuses on the urgent need for cost-effective interventions that reduce crash risk while supporting older drivers to remain driving safely for longer. Our study aims to evaluate the effectiveness of three behavioural interventions for older driver safety. These include an online road-rules refresher workshop, tailored feedback on driving performance and two tailored driving lessons. METHODS AND ANALYSIS: A single-blind three-parallel group superiority randomised controlled trial will be conducted with 198 urban licensed drivers aged 65 years and older, allowing for 4% attrition. This sample size provides 80% power to detect a difference with an alpha of 0.05. Participants will be selected based on a standardised on-road test that identifies them as moderately unsafe drivers. Interventions, spanning a 3-month period, aim to improve driving safety. Their effectiveness will be assessed through a standardised on-road assessment of driving safety at 3 months (T1) and 12 months postintervention (T2). Additionally, monthly self-reported driving diaries will provide data on crashes and incidents.This trial has the potential to identify cost-effective approaches for improving safety for older drivers and contribute to evidence-based health policy, clinical practice and guidelines. ETHICS AND DISSEMINATION: Ethical approval was obtained by the University of New South Wales Human Research Ethics Committee (HC190439, 22 August 2019). The results of the study will be disseminated in peer-reviewed journals and research conferences. TRIAL REGISTRATION NUMBER: ACTRN12622001515785.

Felt Age and Its Psychological Correlates in Dementia Spousal Caregiving Dyads: Findings From the IDEAL Programme.

OBJECTIVES: Evidence suggests spouses influence each other's subjective views on aging. Aligned with the Theory of Dyadic Illness Management, we investigated for the first time similarities in felt age (how old people feel relative to their chronological age) between people with dementia and their spousal caregivers, and how each partner's felt age was related to psychological correlates in the other partner. METHODS: We used baseline (2014-2016) data from 1,001 people with dementia and their spousal caregivers who participated in the British Improving the experience of Dementia and Enhancing Active Life study. We ran linear regressions to analyze the extent to which the felt age of people with dementia and their caregivers were similar, and whether relationship quality was associated with the similarity. We utilized actor-partner interdependence models to analyze whether the felt age of people with dementia and their caregivers were associated with each other's well-being, satisfaction with life, and self-efficacy. RESULTS: The felt age of people with dementia was associated with the felt age of their caregivers (ß = 0.10; p = .001). Caregivers and people with dementia reported a more similar felt age when caregivers rated the caregiving relationship more positively (ß = 0.07; p = .04). Caregivers' felt age was associated with well-being (ß = 0.07; p = .02) and satisfaction with life (ß = 0.06; p = .04), but not with self-efficacy, in people with dementia. DISCUSSION: Felt age in caregivers and people with dementia may be interwoven, and important psychological variables in people with dementia are related to caregivers' felt age. Findings offer empirical evidence on dementia caregiving dynamics and how family relationships are related to views on aging.

Embodied leisure experiences of nature-based activities for people living with dementia.

PURPOSE: This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health. DESIGN/METHODOLOGY/APPROACH: Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis. FINDINGS: The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of 'bodily feelings and emotions', 'sense of self and identity' and 'connectivity to others'. ORIGINALITY/VALUE: The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.

Living Alone With Mild-to-Moderate Dementia Over a Two-Year Period: Longitudinal Findings From the IDEAL Cohort.

OBJECTIVES: To compare the experiences of people with dementia living alone or with others and how these may change over two years. DESIGN: We analysed longitudinal data from three assessment waves, one year apart, in the British IDEAL cohort. SETTING: Participants with mild-to-moderate dementia were recruited through National Health Service providers, where possible with a family caregiver, and interviewed at home. PARTICIPANTS: The current analyses include 281 people with dementia living alone and 1,244 living with others at baseline; follow-up data were available for 200 and 965 respectively at time 2 and 144 and 696 respectively at time 3. For those living alone, 140 nonresident caregivers contributed at baseline, 102 at time 2 and 81 at time 3. For those living with others, 1,127 family caregivers contributed at baseline, 876 at time 2 and 670 at time 3. MEASUREMENTS: Assessments covered: cognitive and functional ability; self-reported perceptions of health, mood, social engagement, quality of life, satisfaction with life and well-being; use of in-home and community care; and transitions into residential care. RESULTS: People living alone tended to have better cognitive and functional ability and were more frequent users of in-home care. However, they experienced poorer physical, social, and psychological health and reduced quality of life, satisfaction with life, and well-being. These differences persisted over time and rates of transition into residential care were higher. CONCLUSIONS: To facilitate continuing in place for people with dementia living alone, a dual focus on supporting functional ability and addressing psychosocial needs is essential in the context of an enabling policy framework.

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

'Caring beyond capacity' during the coronavirus pandemic: resilience and family carers of people with dementia from the IDEAL cohort.

Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study was to explore seven family carers' accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and 'caring beyond capacity' due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout.

Longitudinal Trajectories of Stress and Positive Aspects of Dementia Caregiving: Findings From the IDEAL Programme.

OBJECTIVES: Understanding what influences changes over time in caregiver well-being is important for the development of effective support. This study explores differences in trajectories of caregiver stress and positive aspects of caregiving (PAC). METHODS: Caregivers of community-dwelling individuals with mild-to-moderate dementia at baseline from the IDEAL cohort were interviewed at baseline (n = 1,203), 12 months (n = 917), and 24 months (n = 699). Growth mixture models identified multiple growth trajectories of caregiver stress and PAC in the caregiver population. Associations between study measures and trajectory classes were examined using multinomial logistic regression and mixed-effects models. RESULTS: Mean stress scores increased over time. A 4-class solution was identified: a "high" stable class (8.3%) with high levels of stress, a "middle" class (46.1%) with slightly increasing levels of stress, a "low" class (39.5%) with initial low levels of stress which slightly increased over time, and a small "increasing" class (6.1%) where stress level started low but increased at a steeper rate. Mean PAC scores remained stable over time. A 5-class solution was identified: 3 stable classes ("high," 15.2%; "middle," 67.6%; "low" 9.3%), a small "increasing" (3.4%) class, and 1 "decreasing" class (4.5%). For stable classes, positive ratings on study measures tended to be associated with lower stress or higher PAC trajectories and vice versa. Those with "increasing" stress also had worsening trajectories of several study measures including depression, relationship quality, competence, and ability to cope. DISCUSSION: The findings highlight the importance of identifying caregivers at risk of increased stress and declining PAC and offering them targeted support.

Healthcare Awareness Profile Interview: Development of a new evidence-based brief clinical tool to assess awareness in people with dementia.

People with dementia vary in awareness of difficulties. Evaluating awareness could facilitate personalized care. However, current research measures are unsuitable for practical clinical application. We aimed to develop a brief multidimensional awareness interview for clinical use. Informed by available evidence about awareness of dementia, items suitable for both in-person and remote administration were modified from validated measures or developed for clinical application. The interview was administered via telephone or videoconference to 31 community-dwelling people with mild-to-moderate dementia. An informant completed a corresponding questionnaire. A multidimensional profile of awareness was created using self-report of symptoms, and discrepancies between self-rating and either informant rating or objective memory task performance. Feedback from participants and informants and discussions with clinical advisory and patient and public involvement groups helped finalize the interview. Remote administration was straightforward taking on average under 11 min. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that the items were acceptable and understandable. Certain aspects could be mildly upsetting where current difficulties were highlighted. Subject to further validation, the Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence-based brief clinical tool for assessing awareness in people with mild-to-moderate dementia.

Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme.

OBJECTIVES: Longitudinal evidence documenting health conditions in spousal caregivers of people with dementia and whether these influence caregivers' outcomes is scarce. This study explores type and number of health conditions over two years in caregivers of people with dementia and subgroups based on age, sex, education, hours of care, informant-rated functional ability, neuropsychiatric symptoms, cognition of the person with dementia, and length of diagnosis in the person with dementia. It also explores whether over time the number of health conditions is associated with caregivers' stress, positive experiences of caregiving, and social networks METHODS: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised spousal caregivers (n = 977) of people with dementia. Self-reported health conditions using the Charlson Comorbidity Index, stress, positive experiences of caregiving, and social network were assessed over two years. Mixed effect models were used RESULTS: On average participants had 1.5 health conditions at baseline; increasing to 2.1 conditions over two years. More health conditions were reported by caregivers who were older, had no formal education, provided 10 + hours of care per day, and/or cared for a person with more neuropsychiatric symptoms at baseline. More baseline health conditions were associated with greater stress at baseline but not with stress over time. Over two years, when caregivers' health conditions increased, their stress increased whereas their social network diminished DISCUSSION: Findings highlight that most caregivers have their own health problems which require management to avoid increased stress and shrinking of social networks.

Living well with dementia: An exploratory matched analysis of minority ethnic and white people with dementia and carers participating in the IDEAL programme.

OBJECTIVES: The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of 'living well' among people with dementia and carers from ethnic minority groups with matched white peers. METHODS: We used an exploratory cross-sectional case-control design to compare 'living well' for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. RESULTS: The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (-4.74, 95% CI: -7.98 to -1.50) and higher loneliness (1.72, 95% CI: 0.78-2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72-14.63) and role captivity (2.00, 95% CI: 0.43-3.57) and lower relationship quality (-9.86, 95% CI: -14.24 to -5.48) than their white peers. CONCLUSION: Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages.

Comorbid health conditions and their impact on social isolation, loneliness, quality of life, and well-being in people with dementia: longitudinal findings from the IDEAL programme.

BACKGROUND: Most people with dementia have multiple health conditions. This study explores (1) number and type of health condition(s) in people with dementia overall and in relation to age, sex, dementia type, and cognition; (2) change in number of health conditions over two years; and (3) whether over time the number of health conditions at baseline is related to social isolation, loneliness, quality of life, and/or well-being. METHODS: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised people with dementia (n = 1490) living in the community (at baseline) in Great Britain. Health conditions using the Charlson Comorbidity Index, cognition, social isolation, loneliness, quality of life, and well-being were assessed over two years. Mixed effects modelling was used. RESULTS: On average participants had 1.8 health conditions at baseline, excluding dementia; increasing to 2.5 conditions over two years. Those with vascular dementia or mixed (Alzheimer's and vascular) dementia had more health conditions than those with Alzheimer's disease. People aged ≥ 80 had more health conditions than those aged < 65 years. At baseline having more health conditions was associated with increased loneliness, poorer quality of life, and poorer well-being, but was either minimally or not associated with cognition, sex, and social isolation. Number of health conditions had either minimal or no influence on these variables over time. CONCLUSIONS: People with dementia in IDEAL generally had multiple health conditions and those with more health conditions were lonelier, had poorer quality of life, and poorer well-being.

Methods and approaches to facilitate inclusion of the views, perspectives and preferences of people with moderate-to-severe dementia in research: A narrative systematic review.

BACKGROUND: The perspectives of people with moderate-to-severe dementia are rarely directly elicited in research studies. OBJECTIVES: This systematic review will explore methods and approaches for including the perspectives and preferences of people with moderate-to-severe dementia in research. METHODS: AgeLine, CINAHL, Embase, PsycINFO, PubMed, Social Policy and Practice and Web of Science were searched until June 16 2022. Study quality was assessed using the 16-item Quality Assessment Tool. We described specific communication tools, reviewed the evidence for their effectiveness and considered their strengths and limitations. We examined the more general communication skills and techniques applied to support the use of these tools using thematic synthesis. The review protocol was registered with PROSPERO CRD42019130386 and the review was conducted and reported according to PRISMA guidelines. RESULTS: Seven studies reported in 11 publications were included. In these studies five specific communication tools were used: Talking Mats, Augmentative and Alternative Communication Flexiboard, generic photographs in combination with a preference placement board, consultation ballot and personalised communication prescriptions. Each tool identified had advantages and disadvantages depending on dementia severity, verbal or physical ability, expense, researcher training requirements and ease of use. Thematic synthesis identified five general approaches to optimising communication that were employed to support use of the tools: ensuring conversations are individual and person-centred, managing external influences, engaging others, creating structure and facilitation skills. CONCLUSION: All tools had some utility and there was no clear evidence to support the recommendation of any one specific tool; therefore, researchers are advised to select the tool most appropriate to their context. IMPLICATIONS FOR PRACTICE: The findings offer general guidance for researchers and practitioners on how to facilitate communication with people with moderate-to-severe dementia.

Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme.

INTRODUCTION: Impaired cognition and instrumental activities of daily living (iADL) are key diagnostic features of dementia; however, few studies have compared trajectories of cognition and iADL. METHODS: Participants 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. RESULTS: Self-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. DISCUSSION: Cognition 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. HIGHLIGHTS: Self-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.

Impact of the iWHELD digital person-centered care program on quality of life, agitation and psychotropic medications in people with dementia living in nursing homes during the COVID-19 pandemic: A randomized controlled trial.

INTRODUCTION: iWHELD is a digital person-centered care program for people with dementia in nursing homes adapted for remote delivery during the COVID-19 pandemic. METHODS: A 16-week two-arm cluster-randomized controlled trial in 149 UK nursing homes compared iWHELD with treatment as usual (TAU). Primary outcome was the overall quality of life with secondary outcomes of agitation and psychotropic use. RESULTS: iWHELD conferred benefit to quality of life on the primary (F = 4.3, p = 0.04) and secondary measures of quality of life (F = 6.45, p = 0.01) and reduced psychotropic medication use (χ2  = 4.08, p = 0.04) with no worsening of agitation. Benefit was seen in participants who contracted COVID-19, those with agitation at baseline, and those taking psychotropic medications. DISCUSSION: iWHELD confers benefits to quality of life and key measures of well-being, can be delivered during the challenging conditions of a pandemic, and should be considered for use alongside any emerging pharmacological treatment for neuropsychiatric symptoms. HIGHLIGHTS: iWHELD is the only remote, digital delivery nursing home training programme for dementia care iWHELD improved quality of life in people with dementia and reduced antipsychotic use without worsening of agitation Residents who contracted Covid-19 during the study also experienced benefits from iWHELD iWHELD offers a valuable, pandemic-safe tool for improving dementia care.

Resilience in caregivers of people with mild-to-moderate dementia: findings from the IDEAL cohort.

OBJECTIVES: A novel model of resilience was tested in caregivers of people with mild-to-moderate dementia and was extended to explore whether including self-efficacy, optimism, and self-esteem improved its predictive value. DESIGN: Cross-sectional. SETTING: Data from the IDEAL cohort were used. PARTICIPANTS: The study comprised 1222 caregivers of people with dementia. MEASUREMENTS: A composite resilience score was calculated from five measures. Multivariable regressions were used to investigate factors associated with resilience. RESULTS: Greater resilience was associated with being older, being male, and caregiving for older people with dementia. Greater resilience was also observed when people with dementia had fewer functional difficulties and/or fewer neuropsychiatric symptoms, there was a stronger dyadic relationship, and the caregiver had fewer social restrictions, less neuroticism, and greater perceived competence. Surprisingly, caregiver self-efficacy, optimism, and self-esteem were unrelated to resilience. CONCLUSION: Caregivers of people with mild-to-moderate dementia generally scored well for resilience. Resilience was associated with both the personal characteristics of caregivers and level of care need among people with dementia. Future work is needed to determine whether the caregivers in this cohort appeared resilient because the care recipients had relatively low care needs and consequently placed fewer demands on caregiver well-being than would be the case where dementia is more advanced.

Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme.

OBJECTIVES: This study aims to investigate the impact of self and partner experiences of loneliness and social isolation on life satisfaction in people with dementia and their spousal carers. METHODS: We used data from 1042 dementia caregiving dyads in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme cohort. Loneliness was measured using the six-item De Jong Gierveld loneliness scale and social isolation using the six-item Lubben Social Network Scale. Data were analysed using the Actor-Partner Interdependence Model framework. RESULTS: Self-rated loneliness was associated with poorer life satisfaction for both people with dementia and carers. The initial partner effects observed between the loneliness of the carer and the life satisfaction of the person with dementia and between social isolation reported by the person with dementia and life satisfaction of the carer were reduced to nonsignificance once the quality of the relationship between them was considered. DISCUSSION: Experiencing greater loneliness and social isolation is linked with reduced life satisfaction for people with dementia and carers. However, having a positive view of the quality of the relationship between them reduced the impact of loneliness and social isolation on life satisfaction. Findings suggest the need to consider the experiences of both the person with dementia and the carer when investigating the impact of loneliness and social isolation. Individual interventions to mitigate loneliness or isolation may enhance life satisfaction for both partners and not simply the intervention recipient.

Dyadic influences on awareness of condition in people with dementia: findings from the IDEAL cohort.

Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.

Testing Bidirectionality in Associations of Awareness of Age-Related Gains and Losses With Physical, Mental, and Cognitive Functioning Across 1 Year: The Role of Age.

OBJECTIVES: The bidirectionality between self-perceptions of aging and health-related outcomes may depend on age group. Therefore, we tested such bidirectionality among individuals in late midlife (50-64 years), young-old age (65-74 years), and old-old age (75+ years), taking advantage of the construct of Awareness of Age-Related Change (AARC) and its 2-dimensionality in terms of AARC-gains and AARC-losses. Various conceptualizations of physical, mental, and cognitive functioning were used as outcomes. METHODS: Data from 2 measurement occasions (2019 and 2020) from the UK PROTECT study for individuals in late midlife (N = 2,385), young-old age (N = 2,430), and old-old age (N = 539) were used. Data on self-reported functional difficulties, depression, anxiety, and performance on four computerized cognitive tasks (i.e., verbal reasoning, paired associate learning, self-ordered search, and digit span) providing a score for verbal reasoning and a score for working memory were analyzed using cross-lagged panel models. RESULTS: Across all 3 age groups, the bidirectional associations of AARC-gains with indicators of functioning were not significant, whereas higher AARC-losses significantly predicted slightly greater functional difficulties and higher depression and anxiety levels. Higher AARC-losses predicted slightly poorer Verbal Reasoning only in old-old age and poorer Working Memory predicted slightly higher AARC-losses only in young-old age. The remaining associations of AARC-losses with cognitive tasks were not statistically significant. DISCUSSION: In accordance with previous research targeting other indicators of self-perceptions of aging, this study supported a stronger impact of AARC-losses on indicators of physical functioning and mental health than vice versa from midlife to old-old age.