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. Postdiagnostic support can help people adjust to and assimilate a changing identity. Recovery Colleges in the United Kingdom offer a specific form of postdiagnostic peer-led support. This paper aims to provide a rich account of "stand out" moments where the key tenets of recovery-focused postdiagnostic 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 that shaped outcomes for people with dementia. RESULTS: Five Recovery College dementia courses were observed across four NHS mental health services in England. Postcourse interviews were undertaken with 13 tutors (three peer-tutors with dementia) and 32 attendees (eight 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 postdiagnostic support. Future work should evaluate longer term outcomes for people with dementia attending recovery courses before potentially expanding this form of postdiagnostic support.