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

Linda Clare*, Sharon M. Nelis, Catherine Quinn, Anthony Martyr, Catherine Henderson, John V. Hindle, Ian R. Jones, Roy W. Jones, Martin Knapp, Michael D. Kopelman, Robin G. Morris, James A. Pickett, Jennifer M. Rusted, Nada M. Savitch, Jeanette M. Thom, Christina R. Victor

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

117 Citations (Scopus)
295 Downloads (Pure)

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.
Original languageEnglish
Article number164
Pages (from-to)1-15
JournalHealth and Quality of Life Outcomes
Volume12
Issue number1
DOIs
Publication statusPublished - 30 Nov 2014

Keywords

  • Alzheimer's disease
  • Carer
  • Fronto-temporal dementia
  • Lewy body dementia
  • life satisfaction
  • Parkinson's disease dementia
  • Person with dementia
  • Quality of life
  • Vascular dementia
  • Well-being

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