La maladie d’Alzheimer entraîne chez celui qui en est atteint, une perte des repères dans le temps et l’espace et un bouleversement radical de son lien à l’autre, affectant ainsi toutes les dimensions de sa vie affective, cognitive et sociale. Elle représente en retour pour les proches une menace sans précédent et s’inscrit comme une catastrophe individuelle pour chacun des membres de la famille et pour la relation que l’aidant principal entretient avec le malade. Notre recherche, effectuée avec le soutien de France Alzheimer, auprès de huit aidants familiaux a pour objectif d’appréhender les nuances de l’expérience de la traversée de l’accompagnement en prenant appui sur quelques moments clefs de cet accompagnement. Apparaissant comme tiers dans la relation aidant–malade, la maladie d’Alzheimer appelle chez le proche qui s’occupe du malade un investissement qui vient se greffer sur une relation pré-existante que la maladie remodule de façon singulière. L’impact de la maladie sur le proche est alors à considérer non pas dans une lecture linéaire malade–aidant mais dans la complexité de la circularité qui anime le couple et qui en fait son indétermination.

Alzheimer’s disease affects patients in time and space and all dimensions of emotional, cognitive and social life. It is, in return, an unprecedented threat for the family, a disaster for each member of the family. Because of the love story, because of the suffering, the disease remains the relationship between patient and caregiver. We try to approach their suffering according to the carer’s reports. Our research, conducted with support from France Alzheimer, aims to understand the nuances of the experience of becoming the accompanying person, drawing on some key moments of this accompaniment.

It is through an exploratory research that we met eight caregivers of patients with Alzheimer’s disease. Among them, seven were the spouses (four of seven patients are men), and one was the daughter of a patient. In a clinical psychological environment, we asked each caregiver the same question: “How would you talk about living or having lived Alzheimer’disease?” Our response will only aim to support words of the participant whenever necessary, but will also propose in difficult and particularly challenging moments, the possibility of sharing to enable the participant to verbalize their emotions.

The meeting with some caregivers evidenced the preservation of a particular relationship with the patient, relationship within which the caregiver perceives in return the unspeakable weight of a disease, which works silently. Alzheimer’s disease induces psychological modifications and requires great investment by caregivers, which is grafted on an earlier relationship. We should not consider the modifications in a linear relationship patient–caregiver but in a circular relationship, which complicates the relation of the couple and makes it indecisive. The violence of the confrontation with this disease results from multiple factors: social representations, impact of the diagnosis, evolution of the disease, affectivity and permanent interactions, in spite of the non verbal communication of the patient, which associates a love story, behaviour disorders and the impact on the social circle. The family’s responses are for example denial, overprotection, mothering and aggressiveness in caregiving in order to maintain the relationship. Becoming a caregiver is difficult because of the limit between professional and caregiver. Accompaniment is not a simple role of watching and caring. Because of the love, because of the strength of the communication which continues even in the absence of words, the investment remains massive and Alzheimer’s disease opens a distance where the relationship, if it is perturbed, is none the less reactivated, and makes the accompaniment possible, however painful it may be.