L’épreuve relationnelle de la maladie d’Alzheimer : orientations de la prise en charge et transformation des relations familiales

We examine the complex interconnections between, on one hand, filial and conjugal relationships and, on the other, the ways in which families deal with late-stage Alzheimer’s disease. We show that in certain situations, insofar as the disease disrupts how relationships are experienced, family relationships also orient and frame the manner in which support is provided and in which day-to-day decisions are made. To draw attention to this double dynamic, we selected three dilemmas that the loved ones of Alzheimer’s patients are regularly confronted with and that specifically address the experience of family relationships in illness and end-off-life situations: washing and personal hygiene, placement in extended care facilities, and intervention in the patient’s private affaires. These analyses, based on a qualitative assessment of some 20 monographs done as part of a doctoral thesis (Miceli, 2013), help shed light on the “relational work” undertaken by many partners, children, and loved ones of people suffering from Alzheimer’s or similar diseases