Financed by the Agence Nationale de la Recherche (ANR, France), this project seeks to put into comparative perspective emerging challenges of care for those living with Alzheimer’s disease and Amyotrophic Lateral Sclerosis, and of care for those dying with such illnesses. We aim to describe as concretely as possibly the daily activity of care, either at home, or in another care setting. We seek to understand such care in relation to discussions, planning and practices of preparation for the end of life. Our study compares care for people in France and California, which are settings that have recently implemented new legal frameworks for governing care at the end of life; specifically voluntary assisted dying for certain illnesses in California (including ALS, but not Alzheimer’s), and the clarification of legislation around terminal sedation in France. Thus, in the French and the Californian contexts, the central question asked by this project is: for lives whose cerebral and physical integrity is threatened, how is care that seeks to maintain personhood put into practice, up until death?
Anthony Stavrianakis ; Laurence Tessier (CEMS) ; Isabelle Baszanger (CERMES 3)
ANR (2018-2021) http://www.agence-nationale-recherche.fr/Projet-ANR-17-CE36-0007