The image of patients and caregivers in the social perception of Alzheimer's disease - results from a literature review and a qualitative study considered with this target.

Publié le 1 Janvier 2009
Mis à jour le 5 juillet 2019

Background: Alzheimer's is among the diseases most feared by the population. An analysis of the social perception of the disease seems necessary to approach the reasons for this feeling and its consequences. Methods: A review of the literature was conducted from 37 documents identified in the BDSP, Psych'Info, Medline and the Cochrane Library after a literature and bibliographic search. Following the review, a series of interviews and group meetings were conducted with a hundred people, the general public, caregivers and health professionals in France; they focused on the perceptions and knowledge against Alzheimer's disease, and explored the expectations of support. A content analysis was carried out on the full transcripts of the groups and interviews. Results: The international literature highlights the stigma against people suffering from Alzheimer's disease. The social image of patients corresponds to patients in advanced stages of the disease, described as losing their personality, dehumanized or already dead. In the qualitative study, the patient is virtually absent of evocations in both the general public than among caregivers and health professionals. By contrast, Alzheimer's disease is a disease of the entourage. In both studies, the crucial role of caregivers is ubiquitous; they are custodians of the diagnosis, guarantee the care and welfare of the patient. However, they are not spared from the social exclusion that affects the patient. Conclusions: These studies underscore the very negative social image of the patient with Alzheimer's disease and the ambivalence characterizing the status of caregiver. Avenues for research and action to change the perception of Alzheimer's disease will be presented and discussed. Source : poster cité dans la revue "Alzheimer's & dementia" dans le supplément, volume 5, numéro 4.

Alzheimer's Association International Conference on Alzheimer's Disease, Vienne, 11-16 juin 2009

Auteur : Pin le corre Stéphanie, Scodellaro Claire, Arwidson Pierre, Guilbert Philippe
Année de publication : 2009