Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark

This article explores questions of (non)disclosure among people diagnosed with Alzheimer’s disease, arguing that whether to reveal one’s diagnosis to family and friends is not a straightforward choice. I use the term (non)disclosure to emphasize the fluidity of that choice, as participants often to...

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Main Author: Ida Marie Lind Glavind
Format: Article
Language:English
Published: University Library System, University of Pittsburgh 2023-12-01
Series:Anthropology & Aging
Subjects:
Online Access:http://anthro-age.pitt.edu/ojs/anthro-age/article/view/442
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author Ida Marie Lind Glavind
author_facet Ida Marie Lind Glavind
author_sort Ida Marie Lind Glavind
collection DOAJ
description This article explores questions of (non)disclosure among people diagnosed with Alzheimer’s disease, arguing that whether to reveal one’s diagnosis to family and friends is not a straightforward choice. I use the term (non)disclosure to emphasize the fluidity of that choice, as participants often toggle between revelation and concealment. Common to various strategies is an aim to avoid the strong associations with dementia as social death. By following the aftermaths of disclosure, the article shows that people with Alzheimer’s disease living in Denmark do not experience social death. Rather, they experience marginalization and estrangement but also continuing care. The article reveals that while social death is commonly ascribed to Alzheimer’s, this ascription does not account for the manifold social implications of the diagnosis. The continuing care that people with Alzheimer’s disease receive is often overlooked. To challenge commonplace mischaracterizations of dementia as social death, we must take seriously the experiences of people living with the disease and contribute to redefining common understandings of dementia in ways that include the continuity of social recognition and the possibility of living a good life.
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spelling doaj.art-3667a001ab084b2e922112eb47e9c0332023-12-19T15:36:59ZengUniversity Library System, University of PittsburghAnthropology & Aging2374-22672023-12-0144310.5195/aa.2023.442Questions of (non)Disclosure among People Living with Alzheimer’s Disease in DenmarkIda Marie Lind Glavind0Department of Anthropology, University of Copenhagen The Danish Alzheimer Association This article explores questions of (non)disclosure among people diagnosed with Alzheimer’s disease, arguing that whether to reveal one’s diagnosis to family and friends is not a straightforward choice. I use the term (non)disclosure to emphasize the fluidity of that choice, as participants often toggle between revelation and concealment. Common to various strategies is an aim to avoid the strong associations with dementia as social death. By following the aftermaths of disclosure, the article shows that people with Alzheimer’s disease living in Denmark do not experience social death. Rather, they experience marginalization and estrangement but also continuing care. The article reveals that while social death is commonly ascribed to Alzheimer’s, this ascription does not account for the manifold social implications of the diagnosis. The continuing care that people with Alzheimer’s disease receive is often overlooked. To challenge commonplace mischaracterizations of dementia as social death, we must take seriously the experiences of people living with the disease and contribute to redefining common understandings of dementia in ways that include the continuity of social recognition and the possibility of living a good life. http://anthro-age.pitt.edu/ojs/anthro-age/article/view/442 Disclosure Social deathDiagnosisAlzheimer’s disease Ethnography
spellingShingle Ida Marie Lind Glavind
Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
Anthropology & Aging
Disclosure
Social death
Diagnosis
Alzheimer’s disease
Ethnography
title Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
title_full Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
title_fullStr Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
title_full_unstemmed Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
title_short Questions of (non)Disclosure among People Living with Alzheimer’s Disease in Denmark
title_sort questions of non disclosure among people living with alzheimer s disease in denmark
topic Disclosure
Social death
Diagnosis
Alzheimer’s disease
Ethnography
url http://anthro-age.pitt.edu/ojs/anthro-age/article/view/442
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