“I'm just like I always was”: a phenomenological exploration of leisure, identity and dementia

Abstract

Both negative discourse surrounding dementia and changes that occur from an illness causing dementia can threaten identity. While research shows that identity remains in dementia, little is known about the role leisure plays in identity work in the dementia context. The purpose of this study was to explore the role of leisure in maintaining identity in early-stage dementia. Four participants with dementia living in the community participated in this interpretive phenomenological study. Through multiple interviews, participant observation and photovoice, conducted over several months with each participant, we found that while participants experienced many threatening assaults on identity, leisure served as an important space to uphold identity and remain engaged in life.