Preserving what is seen as having value:A permanent dilemma for families affected by Alzheimer’s disease.Home care availabilities and dynamics

Fondation Plan Alzheimer contract (2013-2015) | Cermes3
Coordinator: Catherine Le Galès, Cermes3

Appreciating the dynamics of the entourage’s involvement in the care of patients affected by Alzheimer’s disease is crucial because of the negative evolution of this pathology and the significant risk of caregivers’ exhaustion.These are the dynamics that we will explore in this new project, the general problematics of which are those of a former research project, which raised the question, with regard to the inconveniences induced by the disease, of the person and his or her family’s responsibility and freedom to choose and maintain the best possible life, using Amartia Sen’s capability approach.

There are many open questions, some of which are general:Who becomes involved and why?Who does what and how?Others are more specific to Alzheimer’s disease:How can the best possible life be maintained over adjustments to the successive deteriorations of the person’s state and capacities?Does the age at which the disease appears have an influence on what the affected persons and their families see as having value?

To answer these questions, the research uses a multidisciplinary approach (economics, sociology, and anthropology) and intersects with the analysis of various sources including cohort data such as the 3C Dijon or Memento studies, or interviews and observations of the patients and their families, several of which were met with during the first research project.

Cermes3 participants: Martine Bungener, Caroline Desprès, Lynda Sifer-River, Lise Demagny, Marc Levaillant, and Yaël Tibi-Levy

External members: Carole Dufouil, epidemiologist, Inserm, ISPED, Bordeaux