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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., (© The Author(s) 2020. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

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., (© 2019 The Author.)

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., (© The Author(s) 2018 Published by Oxford University Press on behalf of the British Geriatrics Society.)

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.

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.

Key components of cognitive lifestyle are educational attainment, occupational complexity and engagement in cognitively stimulating leisure activities. Each of these factors is associated with experiencing fewer depressive symptoms in later life, but no study to date has examined the relationship between overall cognitive lifestyle and depressive symptoms. This task is made more complex because relatively few older participants in cross-sectional studies will be currently experiencing depression. However, many more will show evidence of a depressive thinking style that predisposes them towards depression. This study aimed to investigate the extent to which cognitive lifestyle and its individual components are associated with depressive thoughts and symptoms. Two hundred and six community-dwelling participants aged 65+ completed the depressive cognitions scale, the geriatric depression scale and the lifetime of experiences questionnaire, which assesses cognitive lifestyle. Correlational analysis indicated that each of the individual lifestyle factors-education, occupational complexity and activities in young adulthood, mid-life and later life-and the combined cognitive lifestyle score was positively associated with each other and negatively with depressive symptoms, while all except education were negatively associated with depressive thoughts. Depressive thoughts and symptoms were strongly correlated. Cognitive lifestyle score explained 4.6 % of the variance in depressive thoughts and 10.2 % of the variance in depressive symptoms. The association of greater participation in cognitive activities, especially in later life, with fewer depressive symptoms and thoughts suggests that preventive interventions aimed at increasing participation in cognitively stimulating leisure activity could be beneficial in decreasing the risk of experiencing depressive thoughts and symptoms in later life.

Background: Lifestyle factors represent prime targets for behaviour change interventions to promote healthy ageing and reduce dementia risk. We evaluated a goal-setting intervention aimed at promoting increased cognitive and physical activity and improving mental and physical fitness, diet and health., Methods: This was a pilot randomised controlled trial designed to guide planning for a larger-scale investigation, provide preliminary evidence regarding efficacy, and explore feasibility and acceptability. Primary outcomes were engagement in physical and cognitive activity. Participants aged over 50 living independently in the community were recruited through a community Agewell Centre. Following baseline assessment participants were randomly allocated to one of three conditions: control (IC) had an interview in which information about activities and health was discussed; goal-setting (GS n = 24) had an interview in which they set behaviour change goals relating to physical, cognitive and social activity, health and nutrition; and goal-setting with mentoring (GM, n = 24) had the goal-setting interview followed by bi-monthly telephone mentoring. Participants and researchers were blinded to group assignment. Participants were reassessed after 12 months., Results: Seventy-five participants were randomised (IC n = 27, GS n = 24, GM n = 24). At 12-month follow-up, the two goal-setting groups, taken together (GS n = 21, GM n = 22), increased their level of physical (effect size 0.37) and cognitive (effect size 0.15) activity relative to controls (IC n = 27). In secondary outcomes, the two goal-setting groups taken together achieved additional benefits compared to control (effect sizes ≥ 0.2) in memory, executive function, cholesterol level, aerobic capacity, flexibility, balance, grip strength, and agility. Adding follow-up mentoring produced further benefits compared to goal-setting alone (effect sizes ≥ 0.2) in physical activity, body composition, global cognition and memory, but not in other domains. Implementation of the recruitment procedure, assessment and intervention was found to be feasible and the approach taken was acceptable to participants, with no adverse effects., Conclusions: A brief, low-cost goal-setting intervention is feasible and acceptable, and has the potential to achieve increased activity engagement., Trial Registration: Current Controlled Trials ISRCTN30080637.

Background: Enabling people with dementia and carers to 'live well' with the condition is a key United Kingdom policy objective. The aim of this project is to identify what helps people to live well or makes it difficult to live well in the context of having dementia or caring for a person with dementia, and to understand what 'living well' means from the perspective of people with dementia and carers., Methods/design: Over a two-year period, 1500 people with early-stage dementia throughout Great Britain will be recruited to the study, together with a carer wherever possible. All the participants will be visited at home initially and again 12 months and 24 months later. This will provide information about the way in which well-being, life satisfaction and quality of life are affected by social capitals, assets and resources, the challenges posed by dementia, and the ways in which people adjust to and cope with these challenges. A smaller group will be interviewed in more depth., Discussion: The findings will lead to recommendations about what can be done by individuals, communities, health and social care practitioners, care providers and policy-makers to improve the likelihood of living well with 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: Lifestyle factors playing a role in the development of late-life disability may be modifiable. There is a need for robust evidence about the potential for prevention of disability through behavior change interventions., Methods/design: This feasibility study involves the development, implementation and initial testing of a behavior change intervention in a naturalistic setting. A small-scale randomized controlled trial (RCT) will investigate the implementation of a goal-setting intervention aimed at promoting behavior change in the domains of physical and cognitive activity in the context of a community resource center for over-50s. Healthy older participants attending the center (n = 75) will be randomized to one of three conditions: control (an interview involving a general discussion about the center); goal-setting (an interview involving identification of up to five personal goals in the domains of physical activity, cognitive activity, diet and health, and social engagement); or goal-setting with mentoring (the goal-setting interview followed by bi-monthly telephone mentoring). All participants will be reassessed after 12 months. Primary outcomes are levels of physical and cognitive activity. Secondary outcomes address psychosocial (self-efficacy, mood, quality of life), cognitive (memory and executive function), and physical fitness (functional and metabolic) domains. Cost-effectiveness will also be examined., Discussion: This study will provide information about the feasibility of a community-based lifestyle intervention model for over-50s and of the implementation of a goal-setting intervention for behavior change, together with initial evidence about the short-term effects of goal-setting on behavior., Trial Registration: Current Controlled Trials ISRCTN30080637 (http://www.controlled-trials.com).