Des personnes à part entière? Ethnographie auprès de résidents atteints de troubles neurocognitifs majeurs au stade avancé en centre d'hébergement
The thesis focuses on the daily lives of people with Alzheimer's or other types of dementia, who have reached the very advanced stages (no longer able to express themselves verbally) and who reside in long-term care homes (CHSLD). Mobilizing an interactionist framework, the thesis revolves around the concept of personhood, trying to grasp if and how these vulnerable residents are considered as persons in their own right. The proposed conceptualization of personhood includes three dimensions: recognition of a status as a person; the recognition of a unique individual identity; and the adaptation of the intervention approach, centered on the person. Methodology is based on an 18-month ethnographic approach that draws on 3 main sources of data: 1) participant observation in the form of individual pairing to 8 residents, totaling nearly 200 hours; 2) photographic documentation of accompanied residents and their daily lives (more than 80 photos); as well as 3) semi-structured interviews with 7 relatives and 13 staff members. Results highlight an organizational context marked by insufficient staffing and increased workload, a reality that translates into scarce social contacts outside the episodes of care for residents with severe Alzheimer's. The personhood of these residents are deeply impressed by the uncertainty and ambivalence of the people around them (relatives and staff members) about their status as a person - and even as "living". The thesis proposes a typology of identity in advanced dementia, which comes in various combinations of "pre-dementia identity" (the person we have always known) and "current identity", which is marked by losses but which can also reveal to attentive observers very unique personality and needs. The thesis contributes to theoretical knowledge around the concept of personhood in advanced dementia and to rethink possible interventions with these residents in terms of individual support and presence. It also addresses the issue of the end of life of these citizens, particularly in connection with the ongoing social reflections around the access of incapable people to medical assistance in dying.
Alzheimer Personhood Dementia Long term care Identity End-of-life Ethnography