Living with hope in the midst of Change: The meaning of leisure within the context of dementia

Research exploring identity in the dementia context reveals that some aspects of personal and social identity persist in dementia while others evolve as persons living with dementia find ways to live with the changes in their lives. Leisure can be a space for developing and expressing identity and a space to resist stereotypical images and social expectations. Leisure may also play an important role in providing meaningful activity and engagement in life. Nonetheless, the meaning and experience of leisure in the context of dementia have received very little attention in the literature. Guided by the personhood movement, this phenomenological study aims to understand the subjective experience of dementia and the meaning and experience of leisure in the lives of persons living with early stage dementia. It explores leisure’s role in identity maintenance and/or development and leisure as a space for slowing down the process of dementia and resisting stigma associated with dementia and identity loss that could occur in dementia. Four persons living with early stage memory loss were recruited through local agencies to participate in this study. Each participant engaged in four conversational interviews following McCracken’s (1988) long interview format. Interviews were recorded and transcribed verbatim. Data were also collected through participant observation. The participants and I engaged in at least one of their favourite leisure activities together. Detailed field notes were recorded following each participant observation session. Using the method of photovoice, participants were given disposable cameras and asked to take photos of objects, places, and subjects that were meaningful for their leisure. These photos were discussed in Interview 2. Data were analysed in a manner consistent with phenomenology. Findings revealed that the participants experienced their journeys of memory loss within a paradox of challenge and hope. Participants juxtaposed the negative aspects of living with memory loss with the positive aspects of their lives. Essences of the experience include struggling with change, in which participants experience a wide variety of challenges as a result of being diagnosed with memory loss, including muddled thinking, fluctuating abilities, draining energy, frightening awareness, and disquieting emotions. However, participants counter these changes with the variety of ways in which they tackle life with dementia, including reconciling life as it is, battling through the changes by being proactive, living through relationships, being optimistic, and prolonging engagement in meaningful activity. Participants also experience threatening assaults on identities. Identity is threatened in terms of disappearing roles, losing independence, struggling with demeaning images and expectations, and losing confidence. However, participants juxtapose these threatening assaults by upholding identities. They do this by emphasizing abilities through leisure, changing perspectives, and engaging in life through leisure. This study deepens our current understandings of the subjective experience of dementia and leisure’s role within that experience. It helps us to understand the experience of leisure within the context of memory loss in terms of four lifeworld existentials: lived time, lived space, lived body, and lived other. The findings also contribute to our understandings of how persons living with dementia use leisure to resist a master status of dementia. Participants in this study used leisure as a space for resisting both the stigma of memory loss and the progression of memory loss. They overcome challenges in their leisure to demonstrate to themselves and others that they have many remaining abilities and are able to maintain valued aspects of their identities. The findings suggest that service providers, family members, and persons living with dementia should carefully consider the meaning of leisure and find ways to facilitate involvement in leisure that is meaningful for persons living with memory loss. In terms of future research, leisure in the context of relationships, including the importance of advocacy work for persons with dementia, should be examined. Although this study provides insight into the possibilities of alternative methods for understanding the experience of memory loss, further exploration is needed in this area