Stigma and Social Relations in a Dementia Care Unit

Dementia is a highly stigmatized and stigmatizing condition affecting more than one in eight older adults in the U.S. People with dementia have been characterized by American society as being not quite whole individuals; they are categorically different, the other. In long-term care (LTC) settings for older adults a high level of surveillance combines with existing prejudices against aging and decline. These settings create a microcosm of culture with the potential for heightened stigma against people perceived to be different, such as those with dementia. Some LTC settings include a dementia care unit (DCU), a separate level or unit designed specifically for people with dementia. DCUs have the potential to both exacerbate and shield residents with dementia from the stigmatizing attitudes of others. Utilizing qualitative research methods, this dissertation sought to address three specific aims examining: 1) the stigma of admission to and residence in a DCU in a multi-level LTC setting; 2) whether and how entry into and residence in a DCU affects residents' social relations; and 3) how staff, visitors, family, and other residents react to residents within a DCU. Ethnographic interviews were conducted with eighteen individuals including staff members, family members, and residents of the DCU over the course of ten months of participant observation. Analysis also included data from a previous study at the research site in order to retrospectively examine stigma. Evidence was found of stigmatizing attitudes toward DCU residents which manifested in lying to residents, the infantilization of residents, and the physical, psychological, and social separation of DCU residents from others at the setting. Many other aspects of stigma were identified and are discussed throughout this dissertation. In addition, residents of the DCU were found to recognize differences among each other and to react to one another on the basis of those differences. Although the DCU is envisioned as a safe, supportive environment for older adults with dementia, it falls short of this ideal. Inasmuch as the stigma against dementia remains part of the greater cultural and social environment, the DCU is likely to remain a stigmatized and stigmatizing setting for residents with dementia