“Like a Prisoner”: Stories From Evergreen Manor

Vollständiger Abstract

Worum geht es in dieser Arbeit?

Stigmatizing accounts of dementia emphasize tragedy, constructing people living with dementia as ‘unagentic’ and ‘failed’ aging subjects, and cognitive changes as a loss of self. This stigma has significant consequences for people living with dementia in all aspects of their lives. For example, coupled with the biomedical culture in many long-term care settings, recreation and leisure is often focused on targeting therapeutic goals or managing “difficult behaviours,” rather than on life enrichment. A social citizenship framework challenges these deficit-based approaches by recognizing people living with dementia as active agents with rights, history, and capacities. Relational citizenship further highlights the importance of embodied selfhood and relationships to agency. Although leisure has the potential to support social and relational citizenship, existing research is focused almost exclusively on community-based settings, overlooking more communal institutional living, like long-term care facilities. This study addresses this gap by exploring how leisure shapes social and relational citizenship for people living with dementia living in long-term care settings. Participant observations of leisure programs and research conversations with both people living with dementia and recreation staff were conducted in a long-term care setting in Southern Ontario. Developed through reflexive thematic analysis, four stories reflect the complex relationship between leisure and social citizenship in long-term care contexts: Holding onto Selfhood, The Right to Choose, Beyond Isolation, and Negotiating Freedom and Care. These stories provide important insights into how long-term care environments can intentionally support residents’ social and relational citizenship by prioritizing interdependence and relational agency, and by addressing the systemic and structural barriers that limit relational citizenship in long-term care.