Understanding the experience of emotional and social engagement for people with advanced dementia living in long-term care

Quality of life and well-being for people living with advanced dementia has been positively associated with engaging in meaningful activities and relationships; however, there is limited understanding of what constitutes meaningful engagement, and how it can best be supported for people living with advanced dementia in long-term care homes. Typically, studies have sought the perspectives of family and care providers in exploring experiences of meaningful engagement for these individuals, while few studies have included the perspectives of residents living with advanced dementia themselves. In my dissertation research I sought to address these gaps, gaining a richer and more nuanced understanding of the ways that older adults living with advanced dementia in long-term care homes experience meaningful engagement. I employed a qualitative applied research design, drawing on focused ethnography. Focused ethnography supports a shortened field time and the use of technology in data gathering. My methods included video-recording to capture the experiences of residents living with advanced dementia that are visible but difficult to capture through interview. Participant observation data was gathered across a range of settings in a long-care home while the residents engaged in both structured and unstructured activities and interactions. I also conducted interviews with family members and nursing and allied care staff. Thus, data reflected a range of sources and methods providing multiple perspectives for rich analysis. I observed many examples of meaningful engagement through activities and social connections that occurred during arts-based programming and the quiet routines of everyday life. Drawing on embodied and relational lenses, I found that the residents continued to express creativity, humour, enjoyment, and agency. In contrast, family and staff members typically described the residents in terms of their current losses, positioning their abilities and accomplishments in the past. They drew on these past perspectives in supporting meaningful engagement with the residents through building connections between the past and present. Ultimately, my findings point to the persistent personhood and enduring ability of residents living with advanced dementia to experience meaning. My hope is that these findings will promote long-term care programming better tailored to support their quality of life.Applied Science, Faculty ofNursing, School ofGraduat