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BMC Public Health. 2018 Oct 30;18(1):1214. doi: 10.1186/s12889-018-6129-7.

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.

Author information

1
Centre for Research in Ageing and Cognitive Health (REACH), College of Medicine and Health, South Cloisters, St Luke's Campus, Exeter, EX1 2LU, UK. B.Silarova@exeter.ac.uk.
2
Centre for Research in Ageing and Cognitive Health (REACH), College of Medicine and Health, South Cloisters, St Luke's Campus, Exeter, EX1 2LU, UK.
3
Alzheimer's Society Centre of Excellence, Centre for Research in Ageing and Cognitive Health (REACH), College of Medicine and Health, South Cloisters, St Luke's Campus, Exeter, EX1 2LU, UK.
4
College of Medicine and Health, St Luke's Campus, Exeter, EX1 2LU, UK.
5
London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, UK.
6
WISERD, Cardiff University, 38 Park Place, Cardiff, CF10 3BB, UK.
7
RICE (The Research Institute for the Care of Older People), Royal United Hospital, Bath, BA1 3NG, UK.
8
University of Bristol, Department of Population and Health Sciences, Bristol Medical School, Bristol, BS8 2BN, UK.
9
Innovations in Dementia, PO Box 616, Exeter, EX1 9JB, UK.
10
Newcastle University, Institute for Health and Society, Biomedical Research Building, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL, UK.
11
King's College London, Henry Wellcome Building, Institute of Psychiatry, Psychology, and Neuroscience, De Crespigny Park, London, SE5 8AF, UK.
12
University of Sussex, School of Psychology, Pevensey 1 2B21, Falmer, Brighton, BN1 9QH, UK.
13
Brunel University London, College of Health and Life Sciences, Department of Clinical Sciences, Kingston Lane, Uxbridge, UB8 3PH, UK.

Abstract

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.

KEYWORDS:

Alzheimer’s disease; Caregivers; Dementia; Longitudinal studies; Quality of life

PMID:
30376832
PMCID:
PMC6208177
DOI:
10.1186/s12889-018-6129-7
[Indexed for MEDLINE]
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