Dementia is a term that covers a wide range of different conditions and every person with dementia experiences illness and the challenges it brings in different ways. While prevention and successful treatment of dementia remain elusive, finding ways to live well with dementia are important goals for individuals and their families and this is increasingly a focus of Welsh and UK government policy. But we know relatively little about what living well with dementia means to the people and families affected by it or what factors support or hinder people’s ability to live well. There is also a lack of knowledge about the ways in which people with dementia and their families make sense of and adapt to the condition and to the changes they experience over time.
Researchers at WISERD (Wales Institute of Social & Economic Research, Data & Methods) at Cardiff University, are working in partnership with the Research in Aging and Cognitive Health Group (REACH) at the University of Exeter on a study that specifically addresses the question of what it means to live well with dementia and how this can best be supported. The ESRC and NIHR funded study is called IDEAL, short for Improving the experience of Dementia and Enhancing Active Life and it is the largest UK study of its kind. The researchers have recruited over 1200 people with dementia and their carers living in England, Wales and Scotland into a longitudinal study. Each person and their carer will be interviewed and surveyed at three separate times over three years, allowing changes in their illness, their quality of life and their social circumstances to be carefully measured. In this way the study aims to identify the social and psychological factors that influence people with dementia and their families’ ability to live well with any type of dementia.
The researchers based in WISERD are carrying out some additional in-depth interviews with a smaller number of IDEAL participants to understand the reasons why some social and psychological factors shape people’s experience of living with dementia, for better or worse. This aspect of the study will enable those with dementia, and their families, to describe what is important to them in relation to living well with dementia, in their own words. This information will provide the research team with more detail about how and why certain factors impact on living well.
The research has been planned and developed in partnership with people with dementia and their carers and will provide a much needed evidence base from which to identify what changes could be made at individual and community levels to actually make living well with dementia more achievable. Ultimately, the research team are confident that the study will result in more informed recommendations for social and health care purchasers, providers and planners as well as better informed advice and guidance for people living with dementia and those who support them.