Living with dementia: Exploring the intersections of culture, race, and dementia, stigma

Abstract

Research documents the presence of stigma and discrimination as key components in the lived experience of dementia. However, to date, there is limited understanding regarding how social location, particularly as it relates to culture and race, may shape this experience of stigma and discrimination. In this qualitative exploratory study, personal interviews were held with ten Chinese Canadians living with dementia focused on better understanding how culture, race, and dementia stigma influence their experiences. From the onset, themes related to stigma and discrimination were woven into the participants’ stories about living with dementia. Consistent with other research, all participants described an increased sense of vulnerability and invisibility related to how both they and others responded to their diagnosis of dementia. Participants also provided examples of how this experience of stigma was compounded by culture, race, and immigration status. Importantly, these acts of stigma and discrimination were both externally and internally imposed, resulting in feelings of lack of safety and insecurity. This research draws attention to the increased vulnerability that accompanies a diagnosis of dementia and illustrates how this may be heightened by one’s culture and racism.