Title: Post-Diagnostic Dementia Support within the ReCOVERY College Model: A Realist Evaluation (DiSCOVERY)
Funder: Department of Health and Social Care

Abstract: What is the problem? _x000D_ _x000D_ 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. _x000D_ _x000D_ 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 help with the design and running of the courses. There are also staff members called peer tutors. _x000D_ _x000D_ 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 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. _x000D_ _x000D_ What do we want to find out? _x000D_ _x000D_ We want to understand how, following 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-produce’) courses? We also want to know how people who access NHS memory services find out about Recovery College dementia courses. Do these courses have interest and relevance following a dementia diagnosis, for whom and when? _x000D_ _x000D_ How will we do this? _x000D_ _x000D_ 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. _x000D_ _x000D_ We will visit different Recovery College dementia courses around England and interview people with dementia, their families 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. We can then adapt this to suit local dementia courses. We will involve people with dementia, their families and staff in creating these resources. _x000D_ _x000D_ How have we worked with people with dementia? _x000D_ _x000D_ 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. We will share our findings and resources through services, groups that support people with dementia and the public. _x000D_ _x000D_ How will we share our findings? _x000D_ _x000D_ We will work together with the national Dementia Engagement and Empowerment Project (DEEP). We will share our findings and co-produced resources through local and national groups. These will include NHS memory services, UK Recovery College and other groups that support people with dementia. We will use a variety of media including podcasts, films and talks to engage the public.

Lay abstract: Background _x000D_ Receiving a diagnosis of dementia is life-changing with associated stigma bringing negative messages and social-psychological isolation. People need support but there is significant variability in availability and quality from the NHS following diagnosis. NHS mental health trusts have adopted Recovery Colleges as a possible solution. They offer educational courses that are co-produced by people with a range of mental health difficulties (‘peer tutors’) alongside staff. Dementia is a progressive illness and personal recovery refers to living well and ‘recovering a life after diagnosis’. Many NHS trusts are offering Recovery College courses with and for people with dementia, their families/supporters and mental health staff. Access to co-produced information and peer support in Recovery Colleges may reduce psychological burden and support in adapting to a dementia diagnosis. Recovery College dementia courses are already being delivered but there is an evidence gap in terms of how they are delivered._x000D_ Research question _x000D_ What factors support co-production and delivery of Recovery College dementia courses: what works, for whom, how and in what circumstances?_x000D_ Aims/objectives _x000D_ We aim to develop a realist programme theory of how Recovery College dementia courses as a way of supporting people post-diagnosis, leads to intended and unintended outcomes for people living with dementia/their supporters. Our objectives are to 1) map UK provision of Recovery College dementia courses, 2) conduct a realist review and evaluation with input from key stakeholders to characterise a recovery-focused approach to providing beneficial post-diagnostic support in dementia, 3) identify outcome domains and validated measures which could be used to evaluate Recovery College dementia courses; and 4) provide guidance for co-producing, implementing and delivering recovery-focused, person-centred Recovery College dementia courses._x000D_ Methods _x000D_ Recovery Colleges are a complex intervention with context-sensitive outcomes. To make sense of these we will use two theory-driven approaches: a UK survey and rapid realist review to develop an initial programme theory, then a realist evaluation of five existing Recovery College dementia courses using multiple data collection methods: focused ethnography, interviewing and documentary review. The resulting programme theory of the effective and beneficial components of Recovery Colleges for dementia, impact of contextual factors and underlying mechanisms of change will be used to co-produce guidance and resources to support co-production and co-delivery of recovery-focused post-diagnostic support._x000D_ Delivery timelines _x000D_ The project will be delivered over 36 months: initial programme theory (months 0-6); realist evaluation (months 7-26); select outcome measures (months 20-26); co-produce key resources (months 27-36). _x000D_ Impact/dissemination _x000D_ Findings used to improve access to co-produced and peer-led post diagnostic dementia support within existing NHS structures, and up-skill staff in person-centred post-diagnostic support for people with dementia through learning from lived experience. We plan to provide evidence-based standards for best practice in NHS memory services. We will work throughout with the Dementia Engagement and Empowerment Project, sharing findings and resources through local and national groups, including NHS memory services, Recovery Colleges, other groups supporting people with dementia and the public.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL