Understanding experiences of dementia

SPRU research team

• Lyndsay Lindley
• Kate Baxter
• Yvonne Birks

External collaborators

• Suzanne Ii, Medical Sociology & Health Experiences Research Group, University of Oxford
• Sue Ziebland, Professor of Medical Sociology, University of Oxford
• Adam Barnett, DIPEx Charity, Chief Executive Officer
• Ahmad Krayem, public representative
• Rachael Jennings, Principal Social Worker, Wakefield Council

What is this research about?

In this study we want to understand what matters to people living with dementia and carers of people with dementia. We will use what we find to create a new section for the Socialcaretalk.org website. We will create around 25-30 summaries of topics that matter most to people with direct experience of dementia. These will be illustrated with extracts from filmed or audio-recorded interviews.

While information and advice from support groups and other services may be available, people are sometimes reluctant to use these services. People often find it helpful to listen to the stories of people who have been through similar experiences. Socialcaretalk.org provides this opportunity and can be visited anytime by people who are worried about their own or relatives’ memory problems and associated practical issues. The information on the site will also help people to prepare for conversations with family, GPs and other health and care professionals.

The website will also include resources, based on the research, for health and care workers, and the people who train them. This will help staff to understand what matters to people living with dementia and their carers.

Why are we doing this research?

People with dementia want to enjoy life and do the things they like doing. It is not always easy for people to find the right information and support when they have just had a diagnosis. This research will be used to produce a resource through which people with dementia, their families and carers can find out what helped other people when they faced similar challenges.

How will this research be done?

Stage 1

We will look at what people have told us in previous research projects with people with dementia and family carers. This will help guide our interview sample and identify likely gaps in resources for support and information.

Stage 2

We will interview up to 30 family carers, from a range of backgrounds, who can tell us about their experiences of caring for a friend or relative living with dementia. 

Stage 3

We will talk to up to 30 people with early-stage dementia. The interviews in stages 2 and 3 will be filmed or audio-recorded and analysed using well-established methods.

Stage 4

Around 30 summaries of key topics will be written up, illustrated with carefully selected interview clips. The website production team (called DIPEx) will publish the summaries as new sections on Socialcaretalk.org. The DIPEx charity is experienced in creating websites and resources based on studies of people’s experiences of health and social care. 

Stage 5

When the new sections on the website are ready, we will ask people living with dementia, carers and people working in dementia care to give us feedback at focus groups. We will use the feedback to make final changes to the sections before they are made public.