Role of peer-tutors with dementia in Recovery College dementia courses: an ethnographic account

Background and objectives Receiving a diagnosis of dementia impacts life plans and can lead to feelings of hopelessness and social disengagement. Post-diagnostic support can help people adjust to and assimilate a changing identity. Recovery Colleges in the UK offer a specific form of post-diagnostic peer-led support. This paper aims to provide a rich account of ‘stand out’ moments where the key tenets of recovery-focused post-diagnostic support were enacted. Research design and methods Using ethnographic observations and interview data from the anonymized Study, a realist evaluation of Recovery College dementia courses, we examined data to specify activities of peer-tutors and the mechanisms which shaped outcomes for people with dementia. Results Five Recovery College dementia courses were observed across four NHS mental health services in England. Post-course interviews were undertaken with 13 tutors (3 peer-tutors with dementia) and 32 attendees (8 people with dementia). We found that through co-facilitation of recovery-focused content by peer-tutors who have well developed facilitation skills, attendees appeared to mediate self-stigma, manage emotional uncertainty and make meaningful social connections in ways which engendered hope for their future. Discussion and implications Identifying the activity between peer-tutors with dementia and course attendees foregrounds key strengths and limitations of this distinctive form of post-diagnostic support. Future work should evaluate longer term outcomes for people with dementia attending recovery courses before potentially expanding this form of post-diagnostic support.