Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study.
Health and Quality of Life Outcomes
This is the final version of the article. It first appeared from BioMed Central via http://dx.doi.org/10.1186/s12955-014-0164-6.
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.
The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/1 ‘Improving the experience of dementia and enhancing active life: living well with dementia’ (Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M.D. Kopelman, A. Martyr, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J.M. Rusted, N.M. Savitch, and J.M. Thom). The support of the ESRC and NIHR is gratefully acknowledged. We also acknowledge the support of the NIHR DeNDRoN Writing Group initiative in preparing the IDEAL study funding application and the support of the UK research networks (NIHR CRN DeNDRoN, SDCRN and NISCHR CRC) in carrying out the study.
Research Support, Non-U.S. Gov't
Vol. 12, pp. 164 -
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