Welcome to the DiSCOVERY Study webpage! This exciting new study will look at how NHS mental health Recovery Colleges may help to support people with dementia. Through co-designed and co-run courses it is hoped participants will share learning and experiences with peers with a similar diagnosis.
The diagnosis of dementia is increasing, mainly due to an ageing population and better recognition of the condition. 7% of adults aged 60 and older are living with dementia in the UK.
With funding from the National Institute for Health Research (NIHR), the DiSCOVERY study aims to understand how, following a diagnosis of dementia, support within Recovery Colleges can help people.
DiSCOVERY stands for 'Post-Diagnostic D ement i a S upport within the Re COVERY College Model'.
DiSCOVERY Stakeholder Advert
This diagram shows a summary of the plan for the DiSCOVERY project which will run for just under three years.
How might Recovery Colleges help?
The first UK mental health Recovery College was set up in 2009, with now over 85 of them across the UK. Recovery Colleges 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 to design and run the courses. They are called peer tutors.
We want to understand more about what attending Recovery College courses is like for people with dementia, their families and staff. And whether people living with dementia find designing and delivering courses helps them.
Juniper West, NSFT’s Research Lead for Older People’s Services and Professor Chris Fox from the University of Exeter, are co-leading the project. As Juniper explains,
“Receiving a diagnosis of dementia is life-changing for the person and their family and friends. 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.”
Professor Chris Fox explains,
“It may seem puzzling to talk about ‘recovery’ in dementia, when dementia is a progressive illness. However, recovery in mental health refers to ‘recovering a life after diagnosis’. This 'personal recovery' is about managing difficult symptoms whilst living a meaningful, enjoyable life.
“It is very important we prepare for the future – data from just before the pandemic showed there is wide variation in what post-diagnostic support was available for people with dementia across the UK. If there are no engagement opportunities, people with dementia tend to retreat.
“Taking ownership, learning about the illness and how you can self-manage can help people to live with dementia. Initiatives such as social prescribing, carer support and perhaps Recovery Colleges, may help people to get the support they need."
Case Studies: People with lived experience who are advising the study
Case study: Peter Berry, person with dementia, keen cyclist and author
“It’s important for people who have been diagnosed to realise that people like me have been in the same situation as they are now – their dark place and their post-diagnosis. Normal, run of the mill people like me, can do things and so can they.
I hear so many stories of people getting diagnosed. And their husbands and wives will say – my partner, they just sit there, they’ve given up. It’s difficult for somebody without dementia to try and get somebody with dementia to do something. I think if somebody with dementia can suggest something then we are on the same level. It seems to resonate with people in a different way.
I used to make these videos. And a woman showed it to her husband. He hadn’t done anything for a long time, since he was diagnosed. And it actually prompted him to go in the garden. She told me ‘you’ve given me my husband back’. He said, if that guy can do it then so can I. It gave him a bit more spirit.
If somebody like me has been through the same stuff that they’re going through, you know exactly what it’s like for them and they know you’re not talking rubbish because you’ve been there. You’re on that level all of a sudden.
Finding the thing that helps you live well
I talk about living well with dementia and what it actually means. For me, it’s cycling. And not everyone with dementia can cycle hundreds of miles a month. So living well with dementia doesn’t have to be cycling. It can be gardening, it can be walking, running. It can be something as simple as having a cup of tea, a sticky bun, with some friends in a café twice a week. It can be that simple. But for some reason we don’t seem to realise that – we have to learn that – through this year of depression or eight months, or two years before it kicks in that “Do you know what I can do that, and I can do it well, so why not do it.’
When I cycled across the country this was the first time I realised I could live well with dementia through cycling. It took a long time for me to realise that. It gave me a sense of independence. It was a thing that I had always done and something that I could still do. I could still maintain a bicycle, so the bicycle needed me as much as I needed it. If it went wrong, I fixed it. I was responsible for it. The other people that I cycled with, they couldn’t mend punctures. So all of a sudden I became responsible for them. And also I wasn’t Peter with dementia on the bike, I was 'Peter The Cyclist'. Two completely different things.
It gives me that sense of worth. I’d run a business and dementia had started to take so many things away. It closed so many doors, which was a difficult thing to accept when you’ve been somebody who has been in charge of stuff.
Somehow it makes dementia a little less complicated. You come home and you say I don’t really remember where I’ve been on my bike but I’ve had a damned good time today.
We can’t halt dementia but we can, with a positive attitude, slow it down. I honestly believe, if it wasn’t for the cycling and for the stuff I do, that I wouldn’t be as well now.
Writing the book gave me something to focus on. It’s really good to take something from the condition, when the condition takes something from us. Another important factor is that you can make something good out of something bad, it makes you feel alive.
It’s nice to know that with this course, some people won’t have to go through the marshy, horrible bits of dementia in the early days that people like us have gone through. If it saves people earlier, have more time to live well, it’s got to be a good thing. Try and stop people getting to the point I got to in my life would be a wonderful thing. What I do is better than any pill, and it’s an easier pill to swallow."
Find out more about what Peter is up to here.
Case Study: Irvin and Pauline’s story
Irvin explains his experiences of caring for Pauline who was diagnosed with dementia several years ago.
“As a carer of a dementia patient (Pauline) I know first-hand the sudden impact of a dementia diagnosis has on both patient and carer.
From a patient’s point of view, they think their life has come to an end based really on what they have read and heard about dementia from various sources. Their first reaction is to withdraw from their social life (as Pauline did) as they are scared and fearful. It is vital as soon as possible after diagnosis they can be referred to a ‘living well with dementia course’ as this helps to show that life is worth living and can be good. Importantly it gives them tools to help them to try and manage the situation they find themselves in.
From a carers point of view, well I did not have clue how to start to try and help as a carer, but after helping to set up the course and the things I have learnt in the process I know this course will help people in the future.
The course very much helps to reduce the fear and helplessness of both the carer and patient after the diagnosis, especially if the course is available soon after the diagnosis.
My hope is that the course goes nationwide as soon as possible because I know the effect it has on people’s approach to managing the illness."
Co-leads on the DiSCOVERY project - Juniper West and Professor Chris Fox
Juniper West, Research Development Lead, Older People’s Services at Norfolk and Suffolk NHS Foundation Trust (NSFT)
Juniper'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 ‘well’ with dementia, I was immediately intrigued."
Juniper is co-leading the project together with Professor Chris Fox, and will be conducting qualitative fieldwork at the five case study sites alongside Dr Linda Birt.
Professor Chris Fox, Professor of Clinical Psychiatry, University of Exeter
Chris co-leads this project and brings clinical and research expertise across the work package.
Chris Fox 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 DeNDRoN lead and he ended up head of department of clinical academic medicine until 2021.
Chris has undertaken 4 highly cited Cochrane reviews in dementia, set up and developed clinical trials in dementia as a chief investigator and regional lead.
Chris is leading 3 national programmes of dementia research and has been professor of clinical psychiatry in Exeter since 2021.
Lived Experience Advisory Lead and Group
Rachael Litherland, Co-Lead for the Lived Experience Advisory Group
Rachael is a co-director of Innovations in Dementia CIC. She has worked with people with dementia for over twenty years, and is leading on the PPI aspect of DiSCOVERY, making sure that people with dementia and carers can help to shape the research.
Peter Berry, member of the Lived Experience Advisory Group
Peter was diagnosed with early onset dementia at 50. He is now 57. He maintains that the diagnosis is for the whole family. His journey has been eventful: from depression and suicidal thoughts to a determination to ‘live well with dementia’ right through to his deep desire to educate others about the condition and to raise money for research. A keen cyclist, Peter cycles with his wife, Teresa, and friend Deb. He has cycled thousands of miles for charities, raising thousands of pounds in the process. Peter owns several bikes but his particular love is his penny farthing. This is the bike pictured on the front of his first book (written with Deb Bunt) “Slow Puncture, Living Well with Dementia. His second book, “Walk with Me: Musings Through the Dementia Fog” (also written with Deb) has just been published.
Irvin and Pauline, members of the Lived Experience Advisory Group
Irvin lives in Henley near Ipswich and is married to Pauline. Irvin was an engineer who finished his career as project manager with his own little company. For many years he has been very involved in his local golf club, including managing it. Irvin enjoys golf, gardening and is a big reader. He is very pleased to be involved in DISCOVERY, and has been a peer tutor on many Recovery College courses.
Pauline lives in Henley near Ipswich and is married to Irvin. Pauline was a great sportswoman in her early life. She began her career as a secretary, and then went into fashion buying for the fur department at Harrods, including modelling. Pauline was diagnosed with dementia in 2017. Since then she has been raising awareness with doctors about the process of giving a diagnosis, and is a peer tutor with Irvin on many Recovery College courses.
DiSCOVERY Study Team
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 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.
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
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
I'm an experienced information specialist and realist reviewer, conducting searches and supporting the rapid realist review.
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 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.
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 is a Research Clinical Psychologist at Norfolk and Suffolk Foundation Trust. I 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.
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, 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
My role is to coordinate the day-to-day management of the study.