Welcome to the DiSCOVERY study web page

 

Discovery study logo

The DiSCOVERY study was a three-year research project funded by the National Institute of Health Research. It aimed to explore how Recovery Colleges can support people following a dementia diagnosis.

As part of the study, we developed a set of guides co-produced with individuals living with dementia, their family supporters, and healthcare staff from NHS memory and dementia services, as well as Recovery Colleges involved in the project. These resources are designed to support delivery of a co-produced Recovery College dementia course for post-diagnostic support which is grounded in both research and lived experience.

Please watch the video below to learn more about the study and how the resources are organised.

A guide to delivering a Recovery College dementia course

This resource provides step-by-step support to co-produce a dementia course, which is divided in to five guides: 

Guide 1 - Considering a Recovery College course about Dementia

Guide 2 - Identifying tutors and co-producing content

Guide 3 - Being a peer tutor

Guide 4 - Setting up, advertising and running a course

Guide 5 - Evaluating and sustaining a course

You can download the full guide here: 

 A guide to delivering a co-produced Recovery College dementia course

 

Additionally, if you are a person with dementia, a family supporter or a staff member who knows someone interested in becoming a peer tutor, we have Guide 3 available as a standalone document. 

 Guide 3 - Being a peer tutor.pdf

What is our research about?

Receiving a diagnosis of dementia is life-changing for the person and their family. Stigma can make adjusting to the diagnosis frightening and isolating. Where people live, the type of dementia they have, or lack of opportunities to meet peers, can all affect the quality of support post-diagnosis.

Cartoon image of 2 people Mental health trusts have adopted Recovery Colleges as a way of supporting adults with a range of difficulties. These offer educational courses and peer support for people who use mental health services, their families and staff. People living with mental health difficulties work together with staff members with designing and running courses. They are called peer tutors.

It may seem puzzling to talk about 'recovery' in dementia if dementia is a progressive illness. However, recovery in mental health refers to 'recovering a life after a diagnosis'. This 'personal recovery' is about managing difficult symptoms whilst living a meaningful, enjoyable life. Some Recovery Colleges across the UK offer courses with/for people with dementia.

Please have a listen to our podcast about the study here.

The DiSCOVERY study is also affiliated with the NIHR Applied Research Collaborative (ARC), East of England Inclusive Involvement in Research for Practice Led Health and Social Care theme. This theme works inclusively with people in communities to co-design, carry out, share and implement research findings. It is led by Professor Fiona Poland who is part of the DiSCOVERY research team. https://arc-eoe.nihr.ac.uk/research-implementation/all-projects?theme%5B35%5D=35

To find out more about our study, please click on the following link: 
Post-Diagnostic Dementia Support within the ReCOVERY College Model: A Realist Evaluation (DiSCOVERY) - NIHR Funding and Awards

Potential Pre and Post outcome measures to use

In addition to gathering experience data, our research has reviewed and selected together with our stakeholder groups, some free-to-use recovery-focused outcome measures based on findings from the DiSCOVERY study. It might be worth using these as pre- and -post measures if the course sessions are designed to run over a period of several weeks.

Domain: Hope and resilience

The Positive Psychology Outcome Measure (PPOM)

The Positive Psychology Outcome Measure - Carer Version (PPOM-C)

Domain: Empowerment

The Engagement and Independence in Dementia Questionnaire (EID-Q)

Domain: Caregiver Self-efficacy

The Caregiver Self-Efficacy Scale (CSES-8)

 

 

 

DiSCOVERY Publications

Publications

2024

Handley M, Wheeler C, Duddy C, Wong G, Birt L, Fox C, Moniz-Cook E, Hackmann C, Teague B, West J. Operationalising the Recovery College model with people living with dementia: a realist review. Aging & Mental Health. 2024;28(8):1078-1089. https://doi.org/10.1080/13607863.2024.2356878   

Wolverson E, Hague L, West J, Teague B, Fox C, Birt L, Mills R, Rhodes T, Sams K, Moniz-Cook E. Building an initial understanding of UK Recovery College dementia courses: a national survey of Recovery College and memory services staff. Working with Older People. 2024;28(20:108-119. https://doi.org/10.1108/WWOP-02-2023-0003   

2023

Birt L, West J, Poland F, Wong G, Handley M, Litherland R, Hackmann C, Moniz-Cook E, Wolverson E, Teague B, Mills R, Sams K, Duddy C, Fox C. Protocol for a realist evaluation of Recovery College dementia courses: understanding coproduction through ethnography. BMJ Open. 2023;13(12):e078248. https://doi.org/10.1136/bmjopen-2023-078248

2022

West J, Birt L, Wilson D, Mathie E, Poland F. A case study of co-production within a mental health Recovery College dementia course: perspectives of a person with dementia, their family supporter and mental health staff. Frontiers in Rehabilitation Sciences. 2022;3:920496. https://doi.org/10.3389/fresc.2022.920496

2019

Lowen C, Birt L, West J. Recovery Colleges and dementia courses - a scoping survey. Mental Health & Social Inclusion. 2019;23(4):166-72. https://doi.org/10.1108/MHSI-08-2019-0024

Meet the DiSCOVERY research team

Photo of Chris Fox Professor Chris Fox, Professor of Clinical Psychiatry, University of Exeter and DiSCOVERY co-lead

Chris is an expert in mental health and dementia research. In 2010 he was appointed as the first clinical academic psychiatrist at Norwich Medical School and Eastern region dementia research (DeNDRoN) lead, and he ended up as head of department of clinical academic medicine at the University of East Anglia until 2021. He has undertaken 4 highly cited Cochrane reviews in dementia, and set up and developed clinical trials in dementia as a chief investigator and regional lead. He is leading 3 national programmes of dementia research and has been professor of clinical psychiatry at the University of Exeter since 2021.

“I like what we are exploring in DiSCOVERY because of the potential for post diagnostic support and learning about recovery.” You can link to Chris’s other programmes of research exploring support for family carers of people with dementia (CareCoach study) and sleep in dementia (Times study) here:  https://carecoachtimes.org  

 

Image of Juni West Juniper West, Research Development Lead, Older People's Services at Norfolk and Suffolk NHS Foundation Trust and DiSCOVERY co-lead

Juni's background is in mental health, and particularly, dementia care nursing.

“I’ve always been interested in what helps staff and services be person-centred, and when I found out that people were applying ‘recovery’ principles (connectedness, hope, identity, meaning in life and empowerment) to learning about living positively with dementia, I was immediately intrigued."

Juni is co-leading the project together with Professor Chris Fox, and conducting qualitative fieldwork at the case study sites alongside Dr Linda Birt.

 

Dr Linda Birt, Senior Research Associate, University of East Anglia  Dr Linda Birt, Senior Research Associate, University of East Anglia 

I carry out research about the social impact of living with dementia, or being their supporter. I am excited to have the chance to understand if Recovery Colleges can help people as they adapt to their diagnosis.

 

Professor Fiona Poland, Professor of Social Research Methodology, University of East Anglia  Professor Fiona Poland, Professor of Social Research Methodology, University of East Anglia     

I am a sociologist, Professor of Social Research Methodology and community researcher, with many years' experience in evidencing inclusion of people living with dementia, and seeking to understand formal and informal care work through participation and collaboration.  I edit the journal Quality in Ageing and Older Adults. 


Dr Melanie Handley Senior Research Fellow, Health and Care for Older People, University of Hertfordshire  Dr Melanie Handley Senior Research Fellow, Health and Care for Older People, University of Hertfordshire

I have expertise in realist methodology and I have worked on a number of studies researching the delivery of health and care services for people living with dementia.

 

Professor Geoffrey Wong, Associate Professor in Primary Care, University of Oxford  Professor Geoffrey Wong, Associate Professor in Primary Care, University of Oxford 

I bring realist review and realist evaluation methodological expertise to the DISCOVERY project. I am a Clinically Active NHS GP.

 

 

Claire Duddy Expert librarian, realist methods, University of Oxford  Claire Duddy Expert librarian, realist methods, University of Oxford 

I'm an experienced information specialist and realist reviewer, conducting searches and supporting the rapid realist review.

 

 

Dr Emma Wolverson, Senior Lecturer Ageing and Dementia, University of Hull and Research Lead Dementia UK  Dr Emma Wolverson, Senior Lecturer Ageing and Dementia/Clinical Psychologist, University of Hull 

I am a clinical psychologist working in dementia care and a senior lecturer in ageing and dementia. I bring a passion for hearing about people's experiences in stakeholder collaboration and qualitative methods.

 

 

Professor Esme Moniz-Cook, Professor of Psychology Ageing & Dementia Care Research, University of Hull  Professor Esme Moniz-Cook, Professor of Psychology Ageing & Dementia Care Research, University of Hull 

I trained as a clinical psychologist. I'm actively working to translate novel psychosocial approaches to dementia care. I bring methodological and dementia -related psychosocial expertise to this project. 

 


Dr Bonnie Teague  Head of Research, Norfolk & Suffolk NHS Foundation Trust Dr Bonnie Teague  Head of Research, Norfolk & Suffolk NHS Foundation Trust 

I have a particular interest in equality and representation of under-represented groups in research and would help with considerations relating to access and recruitment in the UK.

 

Dr Corinna Hackmann, Research Development Lead, Norfolk & Suffolk NHS Foundation Trust Dr Corinna Hackmann, Research Development Lead, Norfolk & Suffolk NHS Foundation Trust

I am a Research Clinical Psychologist and have a particular interest in research into personal recovery. I helped to establish the Recovery College at NSFT and have conducted research into recovery colleges and peer support.

 

Ruth Mills, Consultant Clinical Psychologist, Norfolk & Suffolk NHS Foundation Trust  Ms Ruth Mills, Consultant Clinical Psychologist, Norfolk & Suffolk NHS Foundation Trust 

I am a later life Consultant Clinical Psychologist with a passion for co-production.  I have co-developed and co-run Recovery College courses aimed at helping older adults, including people with dementia.

I am interested in how we can overcome barriers to enable accessibility to recovery based courses for all, especially older people and people with living with dementia.

 

Dr Kathryn Sams, Specialist Clinical Psychologist, Norfolk and Suffolk Foundation Trust Dr Kathryn Sams, Specialised Clinical Psychologist, Norfolk & Suffolk NHS Foundation Trust 

I have been working for the trust in older peoples and dementia services for the past 20 years, with a specific interest in supporting carers and those living with a diagnosis of dementia.

     

Tom Rhodes, DiSCOVERY Study Manager  Tom Rhodes, DiSCOVERY Study Manager 

My role is to coordinate the day-to-day management of the study.

 

 

Image of Rob Kelly Robert Kelly, Library Manager

“I manage the library services at Norfolk and Suffolk NHS Foundation Trust; I train our researchers in literature searching skills and techniques, I also facilitate access to research papers through our document supply service.”

 

 

Image of leanne Hague  Leanne Hague, DiSCOVERY Research Assistant Psychologist

“My role is to support across all areas of the study. I am passionate about helping people to live well with chronic conditions.”

 

 

Image of Maria Sanchez Maria Sanchez, DiSCOVERY Research Assistant Psychologist

“I am passionate about understanding how to best approach and embrace individual differences. I am a research assistant and I do research focused on the experiences of post-diagnostic support in underserved and/or ethnic, cultural minority individuals.”

 

 

Do get in touch...

If you want to find out more about the study, or have any questions about the guides, then please email Tom Rhodes, Study Manager at discovery@nsft.nhs.uk