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Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study.

ABSTRACT: 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.

SUBMITTER: Wu YT

PROVIDER: S-EPMC6131832 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study.

Wu Yu-Tzu YT Clare Linda L Hindle John V JV Nelis Sharon M SM Martyr Anthony A Matthews Fiona E FE

BMC medicine 20180911 1

<h4>Background</h4>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.<h4>Methods</h4>The analysis was based on the 1283 dyads of community ...[more]

PMID: 30200957

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Project description:BackgroundThere 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.MethodsIDEAL-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.DiscussionIDEAL-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.

Dataset Information

Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study.

Publications

Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study.

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