Exploring Social Citizenship in the Context of Leisure in Residential Care Settings

Abstract

Dominant stigmatizing narratives of dementia emphasize tragedy, the loss of self, and portray people living with dementia (PLwD) as ‘unagentic’ and ‘failed’ aging subjects. Due to this stigma and the medicalized structure of long-term care (LTC) settings, recreation and leisure are often focused on therapeutic goals or managing “difficult behaviours,” rather than recognizing residents’ desires and aspirations. A social citizenship framework challenges these deficit-based views by recognizing PLwD as active agents with rights, histories, and competencies, while relational citizenship highlights the role of relationships in shaping agency. Although leisure has the potential to either support or undermine social and relational citizenship, existing research has focused almost exclusively on community-based settings, leaving LTC contexts largely unexplored. This study addresses this gap by using an ethnographic approach to narrative inquiry and narrative citizenship to support PLwD in telling their own stories, an opportunity they are often denied in research due to stigma and assumptions about capacity. More specifically it explored how leisure practices in LTC shape social and relational citizenship for PLwD living in these settings. Through fieldwork in a LTC institution in Southern Ontario, I conducted participant observation of leisure programs and research conversations with both PLwD and recreation staff. Four stories reflect the experiences of PLwD and the staff who support them in this LTC setting: Holding onto Selfhood, The Right to Choose, Beyond Isolation, and Negotiating Freedom and Care. This study provides insights into how LTC environments can be reimagined through a relational model of care that intentionally supports the social and relational citizenship of residents by prioritizing interdependence, shared agency, and reciprocal relationships over individualized, person-centred approaches.