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Conflicting experiences of Alzheimer’s disease. When sick people and their relatives describe contrasting trajectories of care-giving

Veronika Kushtanina, Aline Chamahian, Frédéric Balard, Vincent Caradec

Research framework: The literature dedicated to the families of Alzheimer’s patients underlines the burden that taking care of a sick person can represent and the diversity of their experiences. Despite abundant literature on the subject, two blank spaces remain: 1) studies tend to be based on the relatives’ narrations and 2) they tend to grasp the care-giving experience from a solely synchronic standpoint.

Objectives: This article’s ambition is to explore these two under-evaluated perspectives and spur dialogue about the narration of sick people and their relatives from a dyachronic perspective. This article seeks to analyze the relational dynamics developed over time between Alzheimer’s patients and their relatives.

Methodology: Two waves of interviews with 21 Alzheimer’s patients and their relatives conducted over a period of 18 to 24 months.

Results: We present a typology of experiences that confronts the subjective experiences of the sick people and their relatives which considers the trajectories of care-giving.

Conclusions: We reveal three dynamic trajectories (abandonment, the severing of ties and improved relationships) and three types of stable trajectory (including two positively experienced trajectories – proximal and distant – and a relatively tense trajectory that can be quite painful). We analyze how these trajectories are constructed (relationships between the sick person and the relative, cohabitation or separate living spaces and relational history).

Contribution: This article shows that care-giving relationships are a set of interactions in which sick people are equal partners and not solely care-receivers.