Experiences of Dementia Diagnosis pre and post Diagnosis Support: a co-production approach

How can we design a peer support service for people receiving a diagnosis of dementia?

In the UK, 850,000 people are living with dementia, and 38% of the population know someone with the condition. As people live longer and the population grows, living well with dementia is inextricably linked to living well overall.

While academics and policy recognise and support the idea of people with dementia playing a prominent role in the research of their own condition, it is still rare for research into support and care to be developed by these individuals.  

‘The Forget-Me-Nots,’ a group of activists with dementia, have highlighted that being diagnosed with dementia comes with a steep learning curve. They have been faced with the need to learn new skills and navigate unfamiliar health and social care systems. They strongly feel that people with dementia can contribute to improving practice and support for people receiving a diagnosis through peer-support, ideas, and being experts by experience.  

Empowering people with dementia to ask the questions they want to ask, and to have their opinions and views shape the care landscape, will result in people who receive a diagnosis of dementia in the future having the best possible chances of living well with the condition. 

What did the project involve? 

A pair of researchers from the University of Bristol held two workshops, with the aim of developing a peer support service. The first enabled The Forget-Me-Nots, Dr Joe Webb, Dr Jemima Dooley and Professor Val Williams to consolidate their research ideas and goals regarding diagnosis and post-diagnosis experience and support. They identified the desired impact of the research and the appropriate research design to achieve it.

At the second event, a workshop brought together academics, third sector workers, carers and people with dementia to present their ideas for a future research programme.  

Who are the team and what do they bring?

  • Joseph Webb (School of Policy Studies, University of Bristol) is a lecturer in social policy whose research interests centre on understanding and improving the way health and social care policy is enacted in practice. This is informed by his background working in disability social care services. He uses various qualitative methods, including conversation analysis, to examine how policy is ‘talked into being’ and to highlight its impact on people themselves.
  • Jemima Dooley (Population Health Sciences, Bristol Medical School) is a conversation analyst, and qualitative researcher who explores care for people living with dementia.
  • The Forget Me Nots, a team of researchers living well with dementia who developed a peer support network nurtured by the service, emphasising rights, choice, and interdependence.

What were the results?

The workshop series supported an ongoing partnership between the University of Bristol and dementia co-researchers, by enabling and supporting the Forget Me Nots to develop their own research agenda. A commentary on the researchers’ experiences can be found here: ‘Supporting Communication in Dementia Research’

The project also went on to receive Brigstow Institute Seedcorn funding. You can find out about the next stages of the project here:

Using Innovative research methods to explore post-diagnosis support with people with Dementia