Dementia and Intersectionality: Exploring the experiences of older people with dementia and their significant others

Abstract

The aim of this thesis is to demonstrate that new and varied views of dementia surface when the concept of intersectionality is applied to dementia research; and that these perspectives pose challenges to our assumptions about what it is like to have dementia. Grounded theory research from a feminist and anti-oppression perspective was undertaken to explore the question of the relationships between older people‘s experiences of dementia and the intersections of gender, class, ‘race’, and ethnicity. During nine months of field research in Canada, interviews, participant observation, photography, and focus groups were undertaken with eight older people with dementia and their significant others. The participants ranged from multiply marginalized to multiply privileged on the basis of their ‘race’, ethnicity, gender, and class. The grounded theory arising from this research explains the complex nature of the relationships between the subjective experiences of older people living with dementia and the intersections of ethnicity, ‘race’, class, and gender. I argue that there is a connection between social location and lived experiences of dementia; and that these relationships can be observed across and within the categories of experiencing, othering, and theorising. Experiencing captures the diversity of older people’s experiences of dementia, which range from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’: these views are associated with social location, with the multiply privileged older people holding the most negative views of dementia and the multiply marginalized older people dismissing the significance of dementia. Othering refers to the marginalisation to which people with dementia are subject: it is shown to be a marked feature of life with dementia and to be connected to social location, with the multiply privileged people being othered more often as a result of their dementia status; the more marginalised participants demonstrating resilience (as an acquired characteristic); and all being subject to both othering practices and enabling behaviours enacted by members of their social worlds, such as their significant others. The theorising category refers to people with dementia being active meaning makers who theorise about dementia: the outcome of this intellectual activity is shown to be related to social location, with the most privileged participants being the only ones to view dementia as a brain disease; and all others making strategic use of the normal aging theory to avoid marginalisation due to dementia. The result of the theorising done by older people with dementia is a dialectical theory of dementia that positions dementia as a bio-psycho-social phenomenon, disrupts the false dichotomy between normal and pathological, and integrates emic and etic perspectives on dementia.