Finding strategies to live well with dementia is increasingly a focus of UK government policy. But, we know relatively about what living well with dementia means to the people and families affected by it, or what factors support living well and what factors act as a barrier to living well. I’m a qualitative researcher based in WISERD and I’m currently working on a study about living well with dementia. Improving the experience of Dementia and Enhancing Active Life, the IDEAL study, is the largest UK study of its kind. By interviewing 1500 people with dementia from England, Wales and Scotland every year for three years, the study aims to find out what social and psychological factors influence people with dementia and their families’ ability to live well with any type of dementia.
I am the lead researcher on the qualitative part of the IDEAL study and I work closely with Professor Ian Rees Jones, the director of WISERD. Our aim is to understand the reasons why particular social and psychological factors shape people’s experience of living with dementia, for better or worse. Doing qualitative research with people with dementia can be challenging. We rely on our participants to tell us stories about themselves and their lives; this can pose difficulties for those for whom recalling events and reflecting on their meaning provides a significant challenge. However, hearing the stories of those directly affected by dementia is integral to understanding the factors that influence a person, and their families’, ability to manage and cope with its effects.
Our approach is therefore to find strategies for inclusion: to focus less on the specific details of an event or occurrence that someone might describe and instead to explore their feelings about it; to ground our questions in people’s everyday experiences; and to allow more time to enable people to express their thoughts and feelings. This smaller scale qualitative work is essential to the success of the IDEAL study. It enables those with dementia, and their families, to describe what is important to them in relation to living well with dementia, in their own words and on their own terms. It also provides the wider research team with more in-depth detail about how and why certain factors may impact on living well.
The IDEAL study will make a significant impact by providing an evidence base, built from quantitative and qualitative findings, from which to identify what changes could be made at individual and community levels to actually make living well with dementia more possible. We believe our study will result in more informed recommendations for social and health care purchasers, providers and planners as well as more informed advice and guidance for people living with dementia and those who support them.
Dr Alexandra Hillman is a Research Associate at WISERD. She is working on the ESRC funded IDEAL study ‘Improving the experience of dementia and enhancing active life: living well with dementia’. This longitudinal, mixed-method project studies the various factors that enable people to live well with dementia. She is undertaking qualitative research with people with dementia and their relatives/carers to gather detailed information about the lived experience of people with dementia and their families, what it means to live well with dementia and what factors are identified as impacting on their ability to live well.