The image of patients and caregivers in the public perception of Alzheimer's disease—findings from a literature review and a qualitative study focused on this topic.

Background: Alzheimer's is one of the diseases most feared by the general public. An analysis of societal perceptions of the disease is necessary to understand the reasons behind this fear and its consequences. Methods: A literature review was conducted using 37 documents identified in the BDSP, Psych'Info, Medline, and the Cochrane Library following a literature and bibliographic search. Following the review, a series of interviews and group discussions were conducted with 100 participants, including members of the general public, caregivers, and healthcare professionals in France; these focused on perceptions and knowledge regarding Alzheimer’s disease and explored expectations regarding support. A content analysis was performed on the full transcripts of the group discussions and interviews. Results: The international literature highlights the stigma surrounding people with Alzheimer’s disease. The social image of patients corresponds to those in advanced stages of the disease, described as having lost their personality, dehumanized, or already dead. In the qualitative study, the patient is virtually absent from discussions among both the general public and caregivers and healthcare professionals. By contrast, Alzheimer’s disease is perceived as a disease affecting the patient’s social circle. In both studies, the crucial role of caregivers is ubiquitous; they are the custodians of the diagnosis and ensure the care and well-being 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 the caregiver. Avenues for research and action to change the perception of Alzheimer's disease will be presented and discussed. Source: poster cited in the journal "Alzheimer's & Dementia" in the supplement, volume 5, issue 4.

Author(s): Pin le corre Stéphanie, Scodellaro Claire, Arwidson Pierre, Guilbert Philippe

Publishing year: 2009

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