Authors:Blanche Le Bihan (Ecole des hautes études en santé publique)
Isabelle Mallon (Université Lumière Lyon 2)
Arnaud Campeon (EHESP)
Paper short abstract:
The communication investigates care trajectories of patients suffering from Alzheimer disease, marked by successive crisis. Analyzing the tension between the necessity to develop daily routines and the radical redefinition of everyday life entailed by the evolution of the disease, it identifies different forms of integration of uncertainty.
Paper long abstract:
Defined as a brain disorder that causes problems with memory and behavior, dementia -among which Alzheimer disease - affects the patient's ability to carry out daily activities. The disease introduces various forms of vulnerability, according to its gravity but also to the social environment of the patients. In most cases, the disease leads to the reorganization of the daily life, implies both medical and social care, and requires an important involvement of informal family carers.
In this communication we investigate "trajectories of Alzheimer disease", analyzed as biographical trajectories of patients. Permanently threatened by unexpected crisis, the situations of these patients - which involve both the old person and the family caregiver - are characterized by uncertainty. The analysis exposes the results of a qualitative survey, based on the study of 60 situations of dementia. It focuses on the organization and evolution of the care arrangements, combining formal and informal resources, which are set up by families and professionals from the social and health sectors.
The authors argue that crisis is a mainspring of the organization/reorganization of the care arrangements. They also show that the tension between the necessity to develop daily routines which facilitate the everyday life of the patients and the radical redefinition of everyday life entailed by the evolution of the disease, has various forms, according to the life course and social resources of the patients. Different variables are identified which impact the way uncertainty is accepted and integrated as a "way of living" for the patients and their families.
Producing the ordinary in the face of crisis