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

Abstract

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.Electronic supplementary materialThe online version of this article (10.1186/s12889-018-6129-7) contains supplementary material, which is available to authorized users.

The relationship between perceived functional difficulties and the ability to live well with mild‐to‐moderate dementia: Findings from the IDEAL programme

“…The Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme is a 9-year longitudinal cohort study investigating influences on living well with dementia. 25,26 This paper presents crosssectional data from version 2.0 of the IDEAL dataset for initial assessments conducted between July 2014 and August 2016. The cohort at baseline included 1547 participants with dementia together with 1283 informants, mostly spouses/partners.…”

“…An alternative FAQ cut-off score of 9 has been recommended as indicative of impairment 44 and is used primarily in North America; 50 thus, level 3 included those who scored 6 to 9. The remaining three groups reflect equal score ranges comprising 8 points each: level 4 (10-17), level 5 (18)(19)(20)(21)(22)(23)(24)(25), and level 6 (26)(27)(28)(29)(30)(31)(32)(33). Participants with dementia who had no informant participating in the study were included in the analyses using FAQ-S ratings but not in the analyses using FAQ-I ratings.…”

“…19 Living well in people living with chronic illness and disability is defined as the best achievable health state that encompasses all dimensions of physical, mental, and social well-being. 22,25,26 Understanding the relationship between functional ability and subjective perceptions of living well is important, particularly as no preventive or curative treatment for dementia is currently available. 24 Integration of these three concepts captures a more complete understanding of what it is to live well with a particular condition.…”

“…24 Integration of these three concepts captures a more complete understanding of what it is to live well with a particular condition. 22,25,26 Understanding the relationship between functional ability and subjective perceptions of living well is important, particularly as no preventive or curative treatment for dementia is currently available.…”

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

“…We used baseline data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) program [18,19] (data set version 2.0), following yearly for up to 6 years a cohort of people with mild-to-moderate dementia from baseline (hereafter participants) and, where available, a primary carer (relative/friend providing unpaid support to the participant; hereafter carers) [18]. The first phase of IDEAL, covering the first three time points, was approved by Wales Research Ethics Committee 5 (13/WA/0405) and the Ethics Committee of the School of Psychology, Bangor University (reference 2014-11684) and is registered with the UK Clinical Research Network (16593).…”