The role of leisure within the dementia context

Abstract

While our understanding of the subjective experience of dementia is growing, leisure's role within that experience is less clear. This study, guided by hermeneutic phenomenology, aimed to understand the meaning and experience of leisure for persons living with early stage memory loss. Four participants with early stage dementia participated in interviews, participant observation, and photovoice, in which participants are given cameras and asked to take photos of their day to day lives (Wang, 1999). Data revealed that participants experienced daily life with dementia, including leisure, within a paradox of challenge and hope. They struggled with the changes they experienced as a result of dementia, such as muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, they found ways to tackle life with dementia, by reconciling life as it is, battling through by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity to live their lives with hope.

Keywords: Alzheimer’s disease; dementia; leisure; phenomenology; photovoice.