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Why we need to do this project

  • Recent government policy has prioritised living well as a goal for people who have dementia or people who are experiencing difficulties with memory, thinking or behaviour and their primary carers (usually family members).
  • However, there is no clear definition of what it means to 'live well' with conditions such as dementia and no clear understanding of the factors that might influence the ability of individuals and families to live well.
  • There has been some work on quality of life and quality of care but these measures do not capture all the elements involved in living well.
  • There is a need to examine not just what it is like living with conditions like dementia, but the social and environmental context for people. Little is known about how people with dementia or memory problems and their carers make sense of and adapt to the condition and to the changes they experience over time.

What are the aims of the research

This study is a longitudinal cohort study using a mixed methods approach to find out what social and psychological factors support or hinder the ability of people and their families to live well with any type of dementia or similar problems.

  • By longitudinal we mean over time.
  • By cohort study we mean studying the same large group of people.
  • By mixed methods we mean using both quantitative methods (measuring things numerically) and qualitative methods (talking to people to get an in-depth understanding)

At the end of the study we will produce an action plan that will assist policy-makers, purchasers and providers to develop evidence-based policies and practices around living well with dementia.

Research questions

  • What factors influence how people with conditions like dementia and carers are able to live well?
  • How do changes over time affect people's ability to live well?
  • What do people with problems with memory, thinking or behaviour and their carers believe helps or hinders the possibility of living well?

What we hope to achieve

The study will identify what changes could be made by individuals, families and communities to enable people to live well with dementia. At the end of the study we will produce recommendations and an action plan for social and health care purchasers, providers and planners, and advice and guidance for people with dementia or memory problems and those who support them.

For a more detailed description of the project please see our freely available published protocol:

Clare, L., Nelis, S.M., Quinn, C., Martyr, A., Henderson, C., Jones, I.R., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Pickett, J.A., Rusted, J.M., Savitch, N.M., Thom, J.M., & Victor, C.R. (2014). 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, 12, 164. doi: 10.1186/s12955-014-0164-6. (PDF file, 610kb)