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Health Qual Life Outcomes. 2014 Nov 30;12:164. doi: 10.1186/s12955-014-0164-6.

Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study.

Author information

1
Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. l.clare@bangor.ac.uk.
2
Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. s.nelis@bangor.ac.uk.
3
Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. catherine.quinn@bangor.ac.uk.
4
Research in Ageing and Cognitive Health, School of Psychology, Bangor University, Bangor, UK. a.martyr@bangor.ac.uk.
5
Personal Social Services Research Unit, London School of Economics and Political Science, London, UK. c.henderson@lse.ac.uk.
6
School of Medical and Health Care Sciences, Bangor University, and Betsi Cadwaladr University Health Board, Bangor, UK. j.v.hindle@bangor.ac.uk.
7
Wales Institute of Social and Economic Research, Data and Methods, Cardiff University, Cardiff, UK. jonesir4@cardiff.ac.uk.
8
Research Institute for the Care of Older People, Bath, UK. r.w.jones@bath.ac.uk.
9
Department of Social Policy, London School of Economics and Political Science, London, UK. m.knapp@lse.ac.uk.
10
Department of Psychological Medicine, King's College London Institute of Psychiatry, London, UK. michael.kopelman@kcl.ac.uk.
11
Department of Psychology, King's College London Institute of Psychiatry, London, UK. robin.morris@kcl.ac.uk.
12
Alzheimer's Society, London, UK. james.pickett@alzheimers.org.uk.
13
School of Psychology, University of Sussex, Sussex, UK. j.rusted@sussex.ac.uk.
14
Innovations in Dementia, Dementia, UK. nada@innovationsindementia.org.uk.
15
School of Medical Sciences, University of New South Wales, Sydney, Australia. j.thom@unsw.edu.au.
16
Department of Clinical Sciences, Brunel University, London, UK. christina.victor@brunel.ac.uk.

Abstract

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.

PMID:
25433373
PMCID:
PMC4260182
DOI:
10.1186/s12955-014-0164-6
[Indexed for MEDLINE]
Free PMC Article

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