From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia

Abstract

Research on subjective experiences of dementia has paid scant attention to social location, due to fairly homogeneous samples and an inattention to socio-cultural diversity in data analysis. This article addresses this gap by presenting findings from a grounded theory study of the relationships between the experiences of older people with dementia and the intersections of ‘race’, ethnicity, class, and gender. Data generation occurred through a series of interviews, participant observation sessions, and focus groups with eight older people with dementia whose social locations varied from multiply marginalized to multiply privileged plus over 50 members of their social worlds. Their experiences of dementia were found to be varied, ranging from ‘not a big deal’ to ‘a nuisance’ to ‘hellish’, and to be related to their social locations. Negative views of life with dementia were not nearly as universal as past literature suggests and social location was found to mediate experiences of dementia.