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Research Article

Trusting the permanence of self for people with Alzheimer’s disease

orcid-imageGloria Frisoneemail-imageGloria Frisone

Gloria Frisone is a Cultural and Medical Anthropology professor at the University of Milano-Bicocca, the University of Udine, and the University of Milan. Through ethnographic fieldwork between French and Italy, she highlighted the contemporary definition of aging and dementia, primarily Alzheimer’s disease, in diagnostic and common sense. Her last research, funded by the ‘Foundation Croix-rouge française’, focused on the social and medical inequalities of elderly immigrants in Seine-Saint-Denis.

email-image gloria.frisone@unimib.it

Abstract

Although informed consent is rooted in the growing affirmation of the subject’s autonomy, medical anthropology has highlighted the inherent limits of this procedural notion. My ethnographic research in neurological and geriatric clinics between France and Italy showed the triangular (dis)trust relationship—between older people with Alzheimer’s disease (AD), their doctor, and their caregiver. Following their cognitive decline and loss of autonomy, people with Alzheimer’s disease (AD) could be victims of epistemic injustice in two specific moments of the illness: the diagnostic disclosure and the institution of legal protection. If the diagnostic information diminishes the patient’s credibility, the institution of legal protection undermines the patient’s social identity and legal status. However, when caregivers preserve an unconditional trust in the permanence of the patient’s subjective identity, this trust may be conveyed to clinical teams, significantly improving the therapeutic relationship, the course of the disease, and the quality of life for all the actors involved.

Keywords

informed consentAlzheimer’s Disease (AD)cognitive declineloss of autonomydiagnostic disclosurelegal protection(dis)trust relationshipepistemic injusticesocial identitysubjective identity
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Published on: 19 December 2023
Volume: 11
Issue: Supplementary issue 6
Article ID: 103
Pages:103 - 117
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© The author(s) 2023.
Cite this article
Frisone (2023), ' Trusting the permanence of self for people with Alzheimer’s disease ', Journal of the British Academy, 11(Supplementary issue 6): 103 https://doi.org/10.5871/jba/011s6.103

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Normal View Dyslexic View

Trusting the permanence of self for people with Alzheimer’s disease

orcid-imageGloria Frisoneemail-imageGloria Frisone

Gloria Frisone is a Cultural and Medical Anthropology professor at the University of Milano-Bicocca, the University of Udine, and the University of Milan. Through ethnographic fieldwork between French and Italy, she highlighted the contemporary definition of aging and dementia, primarily Alzheimer’s disease, in diagnostic and common sense. Her last research, funded by the ‘Foundation Croix-rouge française’, focused on the social and medical inequalities of elderly immigrants in Seine-Saint-Denis.

email-image gloria.frisone@unimib.it