Dignity, Personhood, or Sacred Selves? Complicating Medical Literature and Caregiver Narratives in Dementia Care

Abstract

Perceptions of people living with dementia are shaped by a variety of “narratives” produced by medical authorities, family members of people living with dementia, and paid care workers. Narratives often define how a person living with dementia should be treated, with a focus on dignity and personhood. Using data from published medical literature, a discussion board for family caregivers, and participant observation of a memory-care unit of a long-term care facility, this paper compares varying narratives about dementia. The medical literature centers dignity and personhood. However, family members problematize dignity in their constructions of personhood. Meanwhile, paid care workers’ practices complicate both dignity and personhood. This paper argues that we can use sociologist Erving Goffman's concept of sacred selves to overcome the limitations of extant narratives and improve care for people living with dementia.