Post-Diagnostic Dementia Support within the ReCOVERY College Model: A Realist Evaluation (DiSCOVERY)

Receiving a diagnosis of dementia is life-changing for the person and their family. Stigma associated with age and dementia can bring serious negative messages at the time of diagnosis, making adjustment difficult, due
to fear and feelings of isolation. NHS mental health services know people need special support after receiving a dementia-diagnosis, but where people live, the type of dementia they have or varying contractual arrangements with voluntary sector groups can affect how ‘peer support’, through meeting other people living
with similar difficulties is available.
NHS mental health trusts have adopted ‘Recovery Colleges’ as a new way of supporting people with a range of difficulties. These offer educational courses for people, their families and staff. Importantly, these courses are co-designed and co-run by people living with mental health difficulties (‘Peer Tutors’) alongside staff. It may seem unusual to talk about ‘recovery’ in dementia because it is a progressive illness. However, ‘recovery’ refers to ‘recovering a life after diagnosis’, focusing on managing difficult symptoms whilst living a meaningful, enjoyable life. Across England, Recovery College courses are developing with and for people with dementia, their families and staff.

Following a dementia-diagnosis we want to understand (1) how support within Recovery Colleges can work well for people with dementia; (2) what attending Recovery College courses is like for people with dementia, their families and staff; (3) what people’s experiences in co-designing and co-running courses are; (4) how people receiving memory services find out about Recovery College dementia courses; (6) who might be interested in these and why; and (7) for who and when following a dementia-diagnosis, courses are of perceived benefit.
We will use Realist Evaluation to find out ‘What works for whom? In what circumstances? and why?’ We will start the project by bringing our early ideas on what makes a Recovery College dementia course work for people who take part; this is our theory to test. We will collect information for finding answers
by visiting different Recovery College dementia courses around the UK, completing surveys and interviewing people with dementia, their families and staff. We will discuss this information with everyone involved then
used to refine our theory to reflect ‘real life’. We will use this updated theory to write standards and create learning and organising resources for UK Recovery Colleges, which they can adapt to suit local dementia courses. People with dementia, their families and staff will be involved in creating these resources.