Exploring health care and personal care decision-making under representation agreements: The lived experience of ‘representatives’ of older adults with dementia

The representation agreement (RA), a legal planning document in British Columbia, allows an adult to appoint a person—i.e., a representative—to assist them with decisions or make decisions on their behalf for health care and personal care matters. This qualitative study explores the lived experiences of representatives of older adults living with dementia during health and personal care decision-making. Semi-structured interviews were conducted with ten current and past representatives. Interviews were analyzed through conceptualizations of the individual, social, and political bodies, articulated in Scheper-Hughes and Lock’s (1987) three bodies approach. The findings reveal six themes that representatives considered meaningful in their decision-making experiences: (1) motivations behind the creation of the RA, (2) the context in which decisions occurred, (3) the decision-making process, (4) facilitators and (5) barriers to decision-making, (6) and representatives’ reflections on their experiences. Bio-medicalized discourse and knowledge of dementia—dominant in Western societies—informs representatives’ experiences. Furthermore, this study illuminates how a dominant medicalized discourse and knowledge of dementia, rooted in Cartesian Dualism, informs representatives’ decision-making approaches