Constructing the experiences of people with advanced dementia who are nearing the end of life

The purpose of this ethnographic case study research was to examine the experiences of people with advanced dementia nearing the end of life, how carers and family constructed and responded to the psychosocial, spiritual, and physical needs of the residents, and how discursive and contextual factors shaped residents’ experiences. The project comprised case studies of two women with advanced dementia who were identified as nearing the end of life, their carers, and family members. Over an 18-month period, I conducted over 600 hours of participant observation, 30 hours of video observation, and in-depth interviews with 23 carers and 2 family members in a nursing home in British Columbia, Canada. Informed by a dialogical perspective, I employed a case-oriented analysis to construct a rich textual and visual portrait of each woman’s life. The first case study illustrated how carers and family understood the resident’s experiences according to four storylines: 1) the deteriorating body; 2) the institutionalized body; 3) the loved body; and 4) the ambiguous body. These storylines culminated in several tensions that underscore the challenges in caring for someone with advanced dementia nearing the end of life, with the notion of liminality providing a framework for discussing this case. The second case study focused on the co-construction of dialogical relationships between the resident, her carers and family. The findings demonstrated that interactions were marked by an ethical obligation towards the resident that went beyond the boundaries of fulfilling instrumental tasks to encountering and acknowledging the resident as a unique person. Findings are discussed in terms of an aesthetic approach to dementia end-of-life care. The theoretical considerations of silence, the cultivation of knowledge, and the moral obligation for carers to nurture dialogical I-Thou relationships provided a framework for integrating the findings. Together, these case studies inform our understanding of the lived experiences of residents with advanced dementia who are nearing the end of life, and how carers and family come to understand and respond to these experiences.Graduate and Postdoctoral StudiesGraduat