Project IIRP09

The DiSCOVERY Study: Post-Diagnostic Dementia Support within the Recovery College Model

This research project will look at how NHS mental health Recovery Colleges may help to support people with dementia following a diagnosis. Recovery colleges offer co-designed and co-run courses where people can share learning and experiences with peers with a similar diagnosis. This research aims to understand how this type of course might work for people living with dementia.

Background

Receiving a diagnosis of dementia is life-changing for the person and their family. Stigma can make adjusting to the diagnosis frightening and isolating. Mental health trusts have adopted Recovery Colleges as a way of supporting adults with a range of difficulties. These offer educational courses for people who use mental health services, their families and staff. People living with mental health difficulties work together with staff members with the design and running of the courses. They are called ‘peer tutors’. Although dementia is a progressive illness, recovery here refers to living well and ‘recovering a life after diagnosis’. This 'recovery' is about managing difficult symptoms whilst living a meaningful, enjoyable life. Some Recovery Colleges across England offer courses with/for people with dementia. 

Research question: What factors support co-production and delivery of Recovery College dementia courses: what works, for whom, how and in what circumstances?

Project aims

We are working with people who have dementia to understand how, following diagnosis, support within Recovery Colleges can work for them. We want to find out what attending courses is like for people with dementia, their families and staff, and about their experiences when they co-design and co-run (‘co-produce’) dementia courses.

We also want to know how people who access NHS memory services find out about Recovery College dementia courses, and whether these courses have interest and relevance following a dementia diagnosis, for whom and when.

Our objectives can be found below:

  1. To find out about Recovery College dementia courses across the UK.
  2. To understand what is known about this type of post diagnosis support by looking at published research and other documents; by visiting and observing Recovery College courses and by talking to people with dementia, their families/supporters and staff who co-produce, deliver and attend Recovery College courses for dementia. This will help us develop a ‘theory’ of how Recovery Colleges work. We will discuss this information with everyone involved then use it to refine our theory to reflect real life.
  3. To work with people with dementia, their supporters and mental health practitioners to co-produce best practice guidance on ‘what works’ for co-developing, implementing and delivering Recovery College dementia courses.

Project activity 

People with dementia and their families helped shape our starting theory of how Recovery College dementia courses could work, by sharing their experiences of what has and hasn’t helped and what is important, and this continues throughout the study with the support of Rachael Litherland, Director at Innovations in Dementia and host of the Dementia Engagement and Empowerment Project (DEEP). We will share our findings and resources through services and other groups that support people with dementia and the public. 

For further information on where we are with the study please visit our frequently updated website here or email the team at discovery@nsft.nhs.uk

Who is involved?

Co-Chief Investigators

  • Chris Fox, University of East Anglia
  • Juniper West, Norfolk and Suffolk NHS Foundation Trust

Researchers and institutions

  • Fiona Poland, University of East Anglia
  • Linda Birt, University of East Anglia
  • Melanie Handley, University of Hertfordshire
  • Geoff Wong, University of Oxford
  • Claire Duddy, University of Oxford
  • Bonnie Teague, Norfolk and Suffolk NHS Foundation Trust
  • Corinna Hackmann, Norfolk and Suffolk NHS Foundation Trust
  • Esme Moniz-Cook, University of Hull
  • Emma Wolverson, University of Hull
  • Ruth Mills, Norfolk and Suffolk NHS Foundation Trust
  • Kathryn Sams, Norfolk and Suffolk NHS Foundation Trust
  • Rachael Litherland, Innovations in Dementia CIC

Contact us

Tom Rhodes (Study Manager), tom.rhodes@nsft.nhs.uk