Because life’s there…understanding the experience and identity of people living with dementia in the context of leisure and fitness centres

Understanding of the meaning and significance of identity, personhood and the social citizenship of people with dementia is growing, and has contributed to progressive approaches in health and social care, which promote the wishes and interests of individuals with dementia. Leisure, physical activity and sport have been part of and shaped lives of individuals and communities throughout history, but only recently have they been considered in relation to people with dementia. This research provides new knowledge concerning how engagement in activity at community leisure and fitness centres (Centres) influences the identity of people with dementia. Four people with dementia, engaging regularly with the offering of their Centre, were recruited as primary research participants, alongside their family carer (applicable to three of the participants), and the Centre Workers supporting engagement. Carers and Centre Workers provided contextual detail to the accounts of primary participants. The methodology endeavoured to co-create knowledge between participants and the researcher, through ongoing consultation with people living with dementia and family carers to inform areas for enquiry and methods. These included participant observation, and go-along interviews. A survey of Centres enhanced understanding of the research context and assisted with participant recruitment. Phenomenological philosophies helped to understand meanings participants drew from their experiences, and thematic analysis of data enabled the distillation of knowledge to address the research question.

Findings show that participation in Centre offerings had benefit for both the person with dementia and their family carer; that Centres can enhance their offering, and improve the experience of participation; and that the person’s choice matters in the design and delivery of sporting and physical activity. More widely, the identities of people with dementia, fostered through engagement at Centres, could be utilised positively within their daily lives in ways that enhanced feelings of agency and supported adjustment to the changing situation that a diagnosis of dementia brings. Thus, identity needs to be included within sport and physical activity policy and practice, and be afforded status alongside traditional features such as enhancing physical fitness. Additionally, enhanced levels of training related to dementia should be provided to Centre Workers because of the important part they play in enabling people living with dementia to engage in activity. The original contribution to knowledge is that people living with dementia can continue to construct their identity through engagement with Centres, so that existing identity can strengthen or new identity form, enabling people with dementia to look forward in aspirational ways and play an active role in their communities.