"When I hear my language, I travel back in time and I feel at home": Intersections of culture with social inclusion and exclusion of persons with dementia and their caregivers.

Abstract

Individuals with dementia and their carers often experience a rupture of relationships that co-occurs with declining functional and cognitive abilities, leading to their increased social exclusion in both intimate relationships and community settings. While initiatives have been developed to support meaningful interaction and participation in society, they have broadly ignored the significance of how cultural factors influence experiences of inclusion/exclusion of these individuals. An ethnographic study was conducted by an interdisciplinary research team between April 2018 and January 2019 to explore the intersections of culture and social inclusion/exclusion in a culturally diverse group of persons with dementia, caregivers and staff members of a non-profit organization located in a multicultural neighborhood of a bilingual Canadian city. The participants’ culture was inextricably linked to their experiences in three overarching themes of social inclusion/exclusion: transformation of the person with dementia and the caregiver; participation in social networks and meaningful relations; and styles of care provision in health and social services. Cultural mandates that prescribe practices of intergenerational care shape the way certain caregivers perceive their role and mitigated experiences of exclusion. Culturally specific notions and views associated with dementia prevalent in certain communities increased experiences of inclusion or exclusion. Engagement with the cultural elements of individuals with dementia was shown to be an effective and underexplored tool for fostering inclusion. The results of this study highlight the value of the ethnographic methods for incorporating the perspective of persons with dementia in research.