'We’re All Getting Older You See, and Things Do Change, Don’t They?’ An Ethnographic Study of Disruption and Continuity in the Daily Lives of Couples Living with Dementia and Co-morbidities

Abstract

Most people with dementia live in the community with a family member, commonly a spouse. Together they engage in identity redefinition to maintain continuity. Many people living with dementia also have co-morbidities. The aim of this study was to provide a better understanding of the influence of co-morbidities on the lived experience of couples and to provide knowledge to improve services. This had not been researched before. Drawing on the dialectic relationship between the body, habitus, environment and common sense from Bourdieu’s theory of practice (1977; 1990) combined with identity theory as described by Burke and Stetts (2009) I conducted an ethnographic study with five couples over a six-month period. The resulting data were analysed using a framework approach and are presented using case studies to illustrate key points. Drawing up on the data I developed an identity perspective which provides a better understanding of these couples’ daily life experiences taking into consideration the contextuality of people’s multiple identities, experiences, care and support needs and their interaction with the environment and community. My findings illustrate how people with dementia and co-morbidities and their spouses negotiate their identity in daily life in order to continue their daily life routine and cope with health conditions. Furthermore, these identity negotiations influence the acceptance of the diagnoses of dementia, the access to care, services and information and the experience of dementia, stigma and co-morbidities in daily life. Implications include a presentation of the limitations of current concepts of embodied selfhood and the Aging in Place policy for people with dementia. It points to the potential of the identity perspective to shape policy, services and care practice consistent with couples’ lived experience and their needs and preferences.