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.

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.

Profiles of social, cultural, and economic capital as longitudinal predictors of stress, positive experiences of caring, and depression among spousal carers of people with dementia.

OBJECTIVE: We explored (1) social, cultural, and economic capital in spousal carers of people with dementia; (2) profiles of carers with different levels of capital; (3) whether the identified profiles differ in levels of stress and positive experiences of caring, and likelihood of depression over time. METHODS: Baseline (2014-2016), 12-month, and 24-month follow-up data were analyzed for 984 coresident spousal carers of people with dementia. We assessed social, cultural, and economic capital, stress, positive experiences of caring, depression. RESULTS: On average, carers reported infrequent social and cultural participation. Most carers were not socially isolated, trusted their neighbours, had education at least to age 16, and had an income aligned with the 2014 UK average. We identified four groups of carers with different levels of capital. Although on average stress was low, depression was infrequent, and positive experiences of caring were moderately frequent, the group of carers with lowest capital was the least stressed and reported the most positive experiences of caring over time. Compared to the two groups with better capital, those with poorer capital were more likely to be depressed over time. CONCLUSION: Social, cultural, and economic resources may decrease likelihood of depression, but not stress, in carers of people with dementia.

Older adults' experiences of loneliness over the lifecourse: An exploratory study using the BBC loneliness experiment.

PURPOSE: To explore older adults' experiences of loneliness across the lifecourse and the relationship with current loneliness. METHODS: Our sample is 6,708 people aged 65 years and older, resident in the UK, who participated in the BBC Loneliness Experiment in spring 2018. Loneliness was assessed using the 3 item UCLA Loneliness Scale, using a threshold score of 6+ to define loneliness. Participants were asked if they had experienced loneliness in 5 life-stages ranging from childhood to old age and, if so, at which stage had they experienced loneliness most intensely. Multivariate logistic regression analysis was used to estimate the odds ratios of experiencing loneliness in relation to previous experiences of loneliness and key covariates. FINDINGS: 41% of participants reported current feelings of loneliness and were more likely than those who did not to spend time alone, have poorer self-rated health, be unmarried, have fewer financial resources, and lower levels of neighbourhood trust. 71% reported they had experienced loneliness at some previous stage in their life, with 26% experiencing it in childhood (5-15 years and 39% as a young adult (16-24 years). Having had three or more prior life stage experiences of loneliness was an independent risk factor for current loneliness. CONCLUSION: We highlight the potential importance of examining older adults' experience of loneliness within a lifecourse perspective. We suggest a research agenda that examines the importance of the number and timing of previous loneliness experiences and investigates the strategies used to cope with loneliness across the lifecourse as a pathway to developing more effective and personalised loneliness interventions.

The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort.

BACKGROUND: The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. OBJECTIVE: To characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members' demographic and clinical characteristics and service costs. METHODS: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014-2018). Latent growth curve modelling investigated associations between participants' baseline sociodemographic and diagnostic characteristics and mean weekly service costs. RESULTS: Data were available on use of paid and unpaid care by 1,537 community-dwelling participants with dementia at Wave 1, 1,199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. CONCLUSION: Lewy body and Parkinson's disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer's disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.

Loneliness in mid-life and older adults from ethnic minority communities in England and Wales: measure validation and prevalence estimates.

We investigated the prevalence of loneliness among 1206 adults aged 40 + from six minority communities in England and Wales: Black Caribbean, Black African, Indian, Pakistani, Bangladeshi and Chinese. Replicating the approach from the previous studies, we demonstrate robust acceptability, reliability and validity for both the six-item De Jong Gierveld (DJG) and single-item loneliness scales in our six ethnic groups. The prevalence of loneliness using a single-item question (loneliness reported as often/always) ranges from 5% (Indian) to 14% (Chinese) compared with approximately 5% for the general population aged 40 + in Britain. Levels of loneliness are very much higher using the DJG scale. Using a loneliness threshold score of 5 +, the percentage ranged from 13% (Indian) to 36% (Chinese). We explored the importance of six established loneliness vulnerability factors for our sample using regression modelling. Three factors were not associated with loneliness-number of children, gender and health rating, and three factors were protective: younger age, being married and low financial strain. The addition of ethnicity did not change these relationships or enhance statistical power of our models. Being a member of the African Caribbean group was protective against loneliness but not for the other groups included in our study. We suggest that exposure to loneliness vulnerability factors rather than ethnicity per se or measurement artefact underpins differences in loneliness across ethnic groups.

Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme.

PURPOSE: The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. METHODS: This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer's Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. RESULTS: Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. CONCLUSIONS: Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme.

OBJECTIVES: To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness. METHODS: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness. RESULTS: Almost half, 43.7%, of caregivers reported moderate loneliness and 17.7% reported severe loneliness. Greater social isolation and increased caregiving stress were linked with both moderate and severe loneliness. Better quality of relationship with the person with dementia along with increased levels of well-being and life satisfaction were associated with a lower relative risk of reporting both moderate and severe loneliness. DISCUSSION: This study examines the prevalence and predictors of loneliness in a large sample of family caregivers of people with dementia. Notably over two-thirds of caregivers in our sample reported feeling lonely. Interventions aimed at reducing caregiving stress and supporting meaningful relationships may go some way towards helping to reduce loneliness.

Lonely places or lonely people? Investigating the relationship between loneliness and place of residence.

BACKGROUND: Loneliness in later life is largely presented as a problem of the individual focusing upon antecedents such as demographic or health factors. Research examining the role of the broader living environments is much rarer. We examined the relationship between loneliness and three dimensions of the lived environment: geographical region, deprivation, and area classification (urban or rural). METHODS: Our sample consisted of 4663 core members (44% males) aged 50+ (wave 7 mean age 72.8, S.D. = 7.1) present both in waves 3 (2006) and 7 (2014) of the English Longitudinal Study of Ageing (ELSA). Loneliness was measured using two approaches, individual and area-based, and both waves included these questions. Individual-based (self-reported) loneliness was assessed using the three item University of California Los Angeles (UCLA) scale (ranging from 3 = not lonely to 9 = lonely) with a score of 6+ defining loneliness. We also used a novel question which asked participants to evaluate how often they felt lonely in their area of residence (area-based; ranging from 1 = often to 7 = never, using cut off 4+ to define loneliness). The lived environment was classified in three different ways: the Index of Multiple Deprivation (IMD), Government Office Regions (GOR), and area classification (urban or rural). Covariates with established relationship with loneliness including demographic factors, social engagement and health, were included in the analyses. RESULTS: In wave 7, the prevalence of individual-based loneliness was 18% and area-based was 25%. There was limited congruence between measures: 68% participants reported no individual- or area-based loneliness and 9% reported loneliness for both measures. After adjusting for individual co-variates only one significant relationship was observed between loneliness and area -based characteristics. A significant association was observed between area-based loneliness and deprivation score, with higher levels of loneliness in more deprived areas (OR = 1.4 for highest quintile of deprivation). CONCLUSIONS: Our results indicate that loneliness in older adults is higher in the most deprived areas independent of individual-level factors. In order to develop appropriate interventions further research is required to investigate how area-level factors combine with individual-level loneliness vulnerability measures to generate increased levels of loneliness in deprived areas.

Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme.

OBJECTIVE: To establish the prevalence and determinants of loneliness among people living with dementia. METHODS: Using 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. RESULTS: About 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. CONCLUSIONS: This 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.

Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme.

BACKGROUND: a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. METHODS: this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. RESULTS: people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. CONCLUSION: although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.

Is Loneliness a Cause or Consequence of Dementia? A Public Health Analysis of the Literature.

Loneliness has been reframed from a 'social problem of old age' into a major public health problem. This transformation has been generated by findings from observational studies of a relationship between loneliness and a range of negative health outcomes including dementia. From a public health perspective, key to evaluating the relationship between loneliness and dementia is examining how studies define and measure loneliness, the exposure variable, and dementia the outcome. If we are not consistently measuring these then building a body of evidence for the negative health outcomes of loneliness is problematic. Three key criteria had to meet for studies to be included in our analysis. To test the proposition that loneliness is a cause of dementia we only included longitudinal studies. For inclusion studies had to measure loneliness at baseline, have samples free of dementia and assess dementia at follow up (specified as a minimum of 12 months). We identified 11 papers published between 2000 and 2018 that meet these criteria. These studies included seven different countries and only one was specifically focused upon dementia: all other studies were cohort studies focused upon ageing and health and wellbeing. There was extensive heterogeneity in how studies measured loneliness and dementia and in the use of co-variates. Loneliness was measured by either self-rating scales (n = 8) or scales (n = 3). Dementia was assessed by clinical tests (n = 5), diagnostic/screening tools (n = 3), cognitive function tests (n = 1), and self-reported doctor diagnosis (n = 2). Substantial variation in loneliness prevalence (range 5-20%) and dementia incidence (5-30 per 1000 person years at risk). Six studies did not report a statistically significant relationship between loneliness and dementia. Significant excess risk of dementia among those who were lonely ranged from 15% to 64%. None of these studies are directly comparable as four different loneliness and dementia measures were used. We suggest that the evidence to support a relationship between loneliness and dementia is inconclusive largely because of methodological limitations of existing studies. If we wish to develop this evidence base, then using a consistent set of loneliness and dementia outcome measures in major longitudinal studies would be of benefit.

The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study.

Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers.Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor-Partner Interdependence Model (APIM) framework.Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad.Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member's life satisfaction and well-being, while the partner's perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.

Use and costs of services and unpaid care for people with mild-to-moderate dementia: Baseline results from the IDEAL cohort study.

INTRODUCTION: We examined 3-month service use and costs of care for people with mild-to-moderate dementia in Great Britain. METHODS: We analyzed Improving the experience of Dementia and Enhancing Active Life cohort study baseline data on paid care, out-of-pocket expenditure, and unpaid care from participants with dementia (N = 1547) and their carers (N = 1283). In regression analyses, we estimated per-group mean costs of diagnostic and sociodemographic subgroups. RESULTS: Use of services apart from primary and outpatient hospital care was low. Unpaid care accounted for three-quarters of total costs (mean, £4008 [standard error, £130] per participant). Most participants (87%) received unpaid care equating to 36 hours weekly. Estimated costs for people with Parkinson's dementia were £8609, £4359 for participants with mixed dementia, and £3484 for those with Alzheimer's disease. Total costs were lower for participants with dementia living alone than living with others (£2484 vs. £4360); costs were lower for female than for male participants (£3607 vs. £4272). DISCUSSION: Costs varied by dementia subtype, carer status, and living arrangement. Policy makers should recognize the high costs of unpaid care for people with dementia, who do not always get the support that they need or would like to receive.

A Comprehensive Model of Factors Associated With Capability to "Live Well" for Family Caregivers of People Living With Mild-to-Moderate Dementia: Findings From the IDEAL Study.

INTRODUCTION: Understanding key influences on outcomes for caregivers of people with dementia is hampered by inconsistent conceptualization and measurement of outcomes and limited evidence about the relative impact of different variables. We aimed to address these issues. METHODS: We analyzed data from 1283 caregivers of community-dwelling individuals with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life cohort study. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being. We used structural equation modelling to derive latent variables for 7 domains reflecting caregivers' perceptions of their personal resources and experiences, and to examine the associations with caregivers' perceptions of their capability to "live well." RESULTS: The domain of psychological characteristics and psychological health was most strongly related to living well [2.53; 95% confidence interval (CI), 2.08-2.97], followed by physical fitness and physical health (1.48; 95% CI, 1.04-1.91) and experiencing caregiving (1.34; 95% CI, 0.99-1.70). Social capitals, assets and resources (0.68; 95% CI, 0.35-1.00) and relationship with the person with dementia (-0.22; 95% CI, -0.41 to -0.03) had smaller, significant associations. Social location (0.28; 95% CI, -0.33 to 0.89) and managing everyday life with dementia (0.06; 95% CI, -0.15 to 0.28) were not significantly associated with living well. DISCUSSION: These findings demonstrate the importance of supporting caregivers' psychological and physical health and their ability to develop and maintain positive coping strategies, as well as enabling them to maintain vital social capitals, assets and resources.

A Comprehensive Model of Factors Associated With Subjective Perceptions of "Living Well" With Dementia: Findings From the IDEAL Study.

INTRODUCTION: We aimed to better understand what predicts the capability to "live well" with dementia by identifying the relative contribution of life domains associated with the subjective experience of living well. METHODS: We analyzed data from 1547 individuals with mild-to-moderate dementia in the IDEAL cohort. We generated a "living well" latent factor from measures of quality of life, satisfaction with life, and well-being. We used multivariate modeling to identify variables related to living well measures and structural equation modeling to derive latent variables for 5 life domains and to examine the associations of these domains with living well. RESULTS: All 5 domains were individually associated with living well. When modeled together, the psychological characteristics and psychological health domain was the only independent predictor of living well [effect size, 3.55; 95% confidence interval (CI): 2.93-4.17], and effect sizes were smaller for physical fitness and physical health (1.23, 95% CI: -0.10 to 2.58), social capitals, assets and resources (0.67; 95% CI: -0.04 to 1.38), managing everyday life with dementia (0.33; 95% CI: -0.06 to 0.71), and social location (0.08; 95% CI: -2.10 to 2.26). DISCUSSION: Psychological resources, and the social, environmental, and physical factors that underpin positive psychological states, are potentially important targets for interventions and initiatives that aim to improve the experience of living with dementia.

Measuring change in trials of physical activity interventions: a comparison of self-report questionnaire and accelerometry within the PACE-UP trial.

BACKGROUND: Few trials have compared estimates of change in physical activity (PA) levels using self-reported and objective PA measures when evaluating trial outcomes. The PACE-UP trial offered the opportunity to assess this, using the self-administered International Physical Activity Questionnaire (IPAQ) and waist-worn accelerometry. METHODS: The PACE-UP trial (N = 1023) compared usual care (n = 338) with two pedometer-based walking interventions, by post (n = 339) or with nurse support (n = 346). Participants wore an accelerometer at baseline and 12 months and completed IPAQ for the same 7-day periods. Main outcomes were weekly minutes, all in ≥10 min bouts as per UK PA guidelines of: i) accelerometer moderate-to-vigorous PA (Acc-MVPA) ii) IPAQ moderate+vigorous PA (IPAQ-MVPA) and iii) IPAQ walking (IPAQ-Walk). For each outcome, 12 month values were regressed on baseline to estimate change. RESULTS: Analyses were restricted to 655 (64%) participants who provided data on all outcomes at baseline and 12 months. Both intervention groups significantly increased their accelerometry MVPA minutes/week compared with control: postal group 42 (95% CI 22, 61), nurse group 43 (95% CI 24, 63). IPAQ-Walk minutes/week also increased: postal 57 (95% CI 2, 112), nurse 43 (95% CI -11, 97) but IPAQ-MVPA minutes/week showed non-significant decreases: postal -11 (95% CI -65, 42), nurse -34 (95% CI -87, 19). CONCLUSIONS: Our results demonstrate the necessity of using a questionnaire focussing on the activities being altered, as with IPAQ-Walk questions. Even then, the change in PA was estimated with far less precision than with accelerometry. Accelerometry is preferred to self-report measurement, minimising bias and improving precision when assessing effects of a walking intervention. TRIAL REGISTRATION: ISRCTN, ISRCTN98538934 . Registered 2 March 2012.

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

BACKGROUND: There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs. METHODS: IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia. DISCUSSION: IDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

Short-term and long-term cost-effectiveness of a pedometer-based exercise intervention in primary care: a within-trial analysis and beyond-trial modelling.

OBJECTIVES: A short-term and long-term cost-effectiveness analysis (CEA) of two pedometer-based walking interventions compared with usual care. DESIGN: (A) Short-term CEA: parallel three-arm cluster randomised trial randomised by household. (B) Long-term CEA: Markov decision model. SETTING: Seven primary care practices in South London, UK. PARTICIPANTS: (A) Short-term CEA: 1023 people (922 households) aged 45-75 years without physical activity (PA) contraindications. (b) Long-term CEA: a cohort of 100 000 people aged 59-88 years. INTERVENTIONS: Pedometers, 12-week walking programmes and PA diaries delivered by post or through three PA consultations with practice nurses. PRIMARY AND SECONDARY OUTCOME MEASURES: Accelerometer-measured change (baseline to 12 months) in average daily step count and time in 10 min bouts of moderate to vigorous PA (MVPA), and EQ-5D-5L quality-adjusted life-years (QALY). METHODS: Resource use costs (£2013/2014) from a National Health Service perspective, presented as incremental cost-effectiveness ratios for each outcome over a 1-year and lifetime horizon, with cost-effectiveness acceptability curves and willingness to pay per QALY. Deterministic and probabilistic sensitivity analyses evaluate uncertainty. RESULTS: (A) Short-term CEA: At 12 months, incremental cost was £3.61 (£109)/min in ≥10 min MVPA bouts for nurse support compared with control (postal group). At £20 000/QALY, the postal group had a 50% chance of being cost saving compared with control. (B) Long-term CEA: The postal group had more QALYs (+759 QALYs, 95% CI 400 to 1247) and lower costs (-£11 million, 95% CI -12 to -10) than control and nurse groups, resulting in an incremental net monetary benefit of £26 million per 100 000 population. Results were sensitive to reporting serious adverse events, excluding health service use, and including all participant costs. CONCLUSIONS: Postal delivery of a pedometer intervention in primary care is cost-effective long term and has a 50% chance of being cost-effective, through resource savings, within 1 year. Further research should ascertain maintenance of the higher levels of PA, and its impact on quality of life and health service use. TRIAL REGISTRATION NUMBER: ISRCTN98538934; Pre-results.