Journal Article Ahead of print
PubMed: 41692977 DOI: 10.1093/geront/gnag010
Role of peer-tutors with dementia in Recovery College dementia courses: an ethnographic account.
Gerontologist
Authors: Linda Birt, Melanie Handley, Juniper West, Jarin Alam, Fiona Poland, Esme Moniz-Cook, Emma Wolverson, Geoff Wong, Corinna Hackmann, Bonnie Teague, Rachael Litherland, Christopher Fox
Affiliations
- School of Healthcare, University of Leicester, Leicester, UK.
- School of Health Sciences, University of East Anglia, Norwich, UK.
- Centre for Research in Public Health & Community Care, University of Hertfordshire, Hatfield, UK.
- Research and Development, Norfolk and Suffolk NHS Foundation Trust, Norwich, UK.
- Faculty of Health Sciences, University of Hull, Hull, UK.
- Geller Institute of Ageing and Memory, University of West London, London, UK + Research and Publications, Dementia UK, London, UK.
- Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
- MSc Innovations in Dementia CIC, Exeter, UK.
- Medical School, University of Exeter, Exeter, UK.
Abstract
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.
MeSH
Dementia, Recycling, Geriatrics