From "the tragic self" to "the empowered self": How leisure spaces can foster narrative agency for people with lived experience of dementia

Harmful cultural narratives equate dementia with a loss of self, citizenship, narrative agency. Although leisure activities are widespread in dementia programs, less attention is paid to leisure’s social justice orientation and potential to resist dominant narratives. Raising the Curtain on the Lived Experiences of Dementia was a five-year community-based participatory research study, guided by the values and practices of social citizenship (Bartlett & O’Connor, 2007, 2010). The project explored how individuals living with dementia made sense of their lived experiences individually and collectively. Analysis of participants’ accounts of their dementia revealed the tragic self and the empowered self as two over-arching themes, showing how participants’ both adopted and resisted dominant dementia narratives. Insights suggest leisure spaces have potential to foster the narrative agency of individuals living with dementia to enable expression of the fullness of their experiences including powerlessness and agency; uncertainty and certainty; dread and joy; conformity and resistance.