Volunteering as Meaningful Activity for People Living With Young Onset Dementia: A Thematic Co-Analysis

Volunteering has been proposed as a way for people with young onset dementia to engage in personally meaningful activities; promoting social connections and creating opportunities to actively participate in the community. However, people with young onset dementia are typically positioned as dependent on volunteers, rather than being recognised as a resource. A social citizenship approach challenges this positioning; illuminating the contribution that people with young onset dementia can make when appropriate support is available. However, there is little understanding of how to facilitate volunteering for people with young onset dementia. This study was co-produced by The Smarties, a team of six researchers living with young onset dementia and two facilitators. Together we explored how people with young onset dementia volunteer in the UK, the benefits and barriers, and how access to volunteering can be improved. Audio data of people with young onset dementia discussing their experiences of volunteering were used from the Dementia Diaries project. The data were co-analysed with the co-researchers living with dementia. Three themes were developed that highlight the importance of valuing the volunteer; encompassing what they bring to the volunteering from their past, what they gain from it in their present, and for what they could achieve in the future. This research contributes to the limited pool of literature demonstrating how volunteering could be a way for people living with young onset dementia to engage in personally meaningful activity. It highlights how volunteering can be a practice of social citizenship, empowering people with dementia to take control of their narrative by learning new skills, building solidarity with peers, and celebrating unique interests and identities. We share practical recommendations guided by the understanding that for volunteering to be accessible to people with young onset dementia, then ensuring disabling structures and practices are recognised and removed is paramount.