Living Well with Dementia (IDEAL)
ESRC and NIHR
External Principal investigator: Professor Linda Clare (University of Exeter)
Co-investigator: C.Victor (Brunel)
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 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.
We will recruit 1500 people over a 24-month period and a primary carer in each case where one is available (we anticipate that there will be 1050 primary carers). Participants will complete questionnaires at three time points: baseline, one year after base line, and two years after baseline. A smaller number of participants will also be interviewed at one and two year time points.
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.