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

Abstract

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.

Keywords

• Disclosure
• Social death
• Diagnosis
• Alzheimer’s disease
• Ethnography