This study is funded by the National Institute for Health Research (NIHR) [reference Health Services and Delivery Research programme NIHR131676]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
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.
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
We want to understand how, following a diagnosis of dementia, support within Recovery Colleges can help people. We want to find out what attending courses is like for people with dementia, their families and staff. How do they find co-designing and co-running - ‘co-producing’ - courses? We also want to know how people who access NHS memory services find out about Recovery College dementia courses.
Are these courses interesting and relevant following a dementia diagnosis, for whom, when and why?
DiSCOVERY is a realist evaluation that uses mixed methods to collect data.
We will ask questions to find out what works for whom, in what circumstances, and why. We will start from our early ideas on what makes a Recovery College dementia course work for people who take part.
We will visit different Recovery College dementia courses around England and interview people with dementia, their family/friend supporters and staff. We will discuss this information with everyone involved then use it to reflect real life. We will use this updated theory to co-produce guidance, learning and organise resources for UK Recovery Colleges. These evidence-based resources will be made freely available, and in formats that can be easily adapted to suit local dementia courses. We will co-produce these resources with people with dementia, their family and friend supporters and staff.
Work Package 1 builds an initial understanding (Initial Programme Theory) of Recovery College dementia courses in the UK through a rapid realist review, a staff survey and discussions with Patient & Public Involvement (PPI) and staff advisory groups. Data analysis and theory building is an iterative process using realist principles and methods throughout.
Work Package 2 involves recruiting participants to a realist evaluation of post-diagnosis Recovery College dementia courses within 5 case studies, where we refine and test the initial programme theory developed in Work Package 1 by incorporating qualitative data from five embedded case studies. To answer our research question, there are many people we need to speak to. Our research participants are:
We will also deliberate further with the PPI and staff advisory groups.
Work Package 3 is a scoping review where we will review domains of outcome - potential impacts of attending recovery focused dementia courses - emerging from the programme theory, and draw on literature to select measures that align with these outcomes. These will be reviewed and discussed with PPI and staff advisors to create a ‘library’ of outcome measures as resources for people to use to evaluate the impact of Recovery College dementia courses.
Work Package 4 involves co-producing with PPI and staff advisors accessible resources of ‘what works’, to support planning, co-production, implementation and evaluation of Recovery College dementia courses, and sharing these with knowledge users from memory services and Recovery Colleges, and the public.
Working with our two advisory groups is important because we are co-producing and later refining our initial ideas (programme theory) of why and how Recovery College dementia courses are thought to work, together with our Patient & Public Involvement (PPI) and staff advisors. The advisory groups are involved in a two-way engagement process progressing decision-making, which is important given the iterative nature of our study design and evolving findings.
The PPI advisory group for DiSCOVERY is run independently by Rachael Litherland (pictured). Rachael is a co-director of the not-for-profit Innovations in Dementia CIC (Community Interest Company) who host the national Dementia Engagement and Empowerment Project (DEEP) https://www.dementiavoices.org.uk/
Rachael has worked with people with dementia for over twenty years and is making sure that an advisory group of up to 10 people with dementia and their family and friend supporters can help to shape the research. http://www.innovationsindementia.org.uk/what-we-do/recovery-and-discovery/
Here are some of the group’s practice values:
Members include people with dementia who have attended a Recovery College course and includes people from across the UK.
A key focus of Rachael’s role is to provide the support needed for people to continue their involvement even as their needs change.
The group meets on Zoom between 4 and 6 times a year, at critical project delivery points to review research materials, give perspectives on research approaches and discuss and review all emerging findings.
The research team are helped to involve people with dementia and family/friend supporters in the best ways possible with opportunities to learn with and from advisory group members.
The PPI advisory group includes people living with dementia working with NSFT’s East Suffolk Care Group who helped to shape the DiSCOVERY study and prepare the grant application.
Pictured left to right: Pauline Bunker, Irvin Bunker, Anna Seiffer, Peter Berry, Melanie D'Ardis, Teresa Berry, Chloe Randall, celebrating Peter's recently published book "Slow Puncture" about living well with dementia.
Scroll down to the Study Launch Press Release section on this page to read their stories.
Psychologists, nurses, assistant practitioners, doctors, support workers or occupational therapists working in NHS memory services and/or Recovery Colleges and have knowledge and/or experience of co-producing recovery-focused/Recovery College dementia courses, are invited to join our staff advisory group.
The membership is rolling, with new members being able to join the group if other people no longer feel able to participate.
Members of the research team meet with the group online at critical project delivery points to discuss and review all emerging findings.
What the group has worked on
We have had two meetings via Microsoft Teams to discuss the research completed so far. This included the initial early ideas (programme theory), which shows how we understand a Recovery College dementia course to work. We talked about what may be difficult or helpful in running dementia courses, and what good co-production ‘looks’ like.
Future work
The group will meet again to discuss findings from the next stage of the study. In future the staff advisory group will meet with the PPI (group name to be decided) group to co-produce resources to help to run Recovery College dementia courses. This will include looking at different validated outcome measures, and deciding which ones would be the most relevant to Recovery College dementia courses, which will help to evaluate the effectiveness of future courses.
Interested in taking part?
If you are interested in joining our staff advisory group, please email discovery@nsft.nhs.uk for more information.
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
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 
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 
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 
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.
Dr Emma Wolverson, Senior Lecturer Ageing and Dementia, University of Hull and Research Lead Dementia UK 
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 
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 
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 
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 
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.
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.”
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.”
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.”
New project to offer hope after a diagnosis of dementia
A new study focusing on how NHS mental health Recovery Colleges can help to support people with dementia is being launched by Norfolk and Suffolk NHS Foundation Trust’s (NSFT) research department. The study is called DiSCOVERY and is funded by the National Institute for Health Research.
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.
With rates of dementia diagnosis increasing, it is critical we find ways for people with dementia to make connections, learn from peers and stay in touch with others, as this can be just as important as medication.
7% of adults aged 60 and older are living with dementia in the UK
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.”
“There is interesting evidence that being isolated and lonely makes your cognition worse. More social contact is shown to improve outcomes for people with dementia and carers.”
The Patient and Public Involvement (PPI) group will be central to all the research activities in the study. Members will include both people with dementia who have experience of working with staff to produce a Recovery College dementia course, and people with dementia who have attended a course from across the UK.
The findings from the study will be used to produce guidance, learning and organise resources for UK Recovery Colleges. These can then be adapted to suit local dementia courses. We will involve people with dementia, their families and staff in creating these resources.
Case study: Peter Berry, keen cyclist and author, and his wife Teresa from Friston, Suffolk are part of the PPI advisory group for DiSCOVERY.
Peter (pictured) 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.
Peter believes the DiSCOVERY study is important because:
“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.
It’s nice to know that with this Recovery College 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, to 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.
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.
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 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.
Writing the book with my friend Deb (pictured) 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.”
Find out more about what Peter is up to here - https://peterberrylwa.wixsite.com/peterberry
Case study: Irvin and Pauline, from East Suffolk are part of the PPI advisory group for DiSCOVERY.
Irvin (pictured) lives in Henley near Ipswich and is married to Pauline. Irvin was an engineer who finished his career as project manager with his own 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.
“As a carer of my wife Pauline, who has dementia, I know first-hand the sudden impact of a dementia diagnosis has on both patient and carer.
From a person with dementia’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 a clue how to start to try and help as a carer, but after helping to set up the recovery course and the things I have learnt in the process I know these kinds of courses WILL help people in the future.
A Recovery College course very much helps to reduce the fear and helplessness of both the carer and person with dementia after the diagnosis, especially if the course is available soon after the diagnosis.
My hope is that these courses go nationwide as soon as possible because I know the effect it has on people’s approach to managing the illness.”
Pauline (pictured) 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. Meeting other people with dementia through the courses has been especially important for her: “There was a fellow, with a friend there and I kept looking at him and I kept thinking you wouldn’t even know, you know, and I’m thinking well probably that’s how I feel I am, and he was talking and you would not have known, and to me, that was, you know, I thought that was great, that was great. It really did help me.”
EDITOR’S NOTES
1/ For more information or to request an interview with Juniper West at NSFT or Professor Chris Fox at University of Exeter, please contact NSFT comms team Amanda Barlow amanda.barlow@nsft.nhs.uk
2/To interview either of our case studies please contact Rachael Litherland: rachael@myid.org.ukOffice telephone: 01392 420076Mobile: 07549 944796Rachael is a co-director of Innovations in Dementia CIC. She is leading on the PPI aspect of DISCOVERY, making sure that people with dementia and carers can help to shape the research.
3/ To find out more about the study please visit: New study which will look at how NHS mental health Recovery Colleges may help to support people with dementia | Norfolk and Suffolk NHS (nsft.nhs.uk)
4/ We are keen to promote accessibility of media to those with dementia – so if possible please follow the following suggestions in media related to this story:
5/ The mission of the National Institute for Health Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
NIHR is funded by the Department of Health and Social Care. Its work in low- and middle-income countries is principally funded through UK Aid from the UK government.
Understanding and examining experiences and views of post-diagnostic dementia support from a wide range of people from ethnic and culturally diverse backgrounds is an important part of the DiSCOVERY study. This is because what is clear from our engagement work and prior research is that at present, there is little appropriate support for people from ethnic and culturally diverse backgrounds living with dementia post-diagnosis.
As part of the study we will work with people to co-produce inclusive guidance for implementing Recovery College dementia courses which will resonate with the needs of people from ethnic and culturally diverse backgrounds.
We are inviting people to become advisors to the project. Public advisors can be people living with, or supporting people living with dementia, and will be able to offer insights into the needs and challenges facing people from ethnic and culturally diverse backgrounds following a diagnosis of dementia.
If you are interested in joining the DiSCOVERY study as such an advisor, please email us at discovery@nsft.nhs.uk or call us and leave a message on 01603 421 397.
Norwich Science Festival 2023
Thank you for joining us at the #NorwichScienceFestival for the talk “What does recovery in relation to dementia mean?” We heard from Chris Fox, Juni West, Jane Cross, Peter Berry, Deb Bunt, & Geoff Fenwick on living with Dementia, Tips on social interaction, supporting loved ones, & finding joy. There was a book signing for Slow Puncture by Peter Berry and Deb Bunt. The talk was expertly chaired by Award-winning presenter Jo Durrant.
Come back for our next update to find out how the talk went.
Newsletters
DiSCOVERY Newsletter March 2023.pdf [pdf] 167KB
DiSCOVERY Newsletter June 2023.pdf [pdf] 2MB
If you want to find out more about the study, or want to be involved, then please email Tom the study manager at discovery@nsft.nhs.uk
