Electronic Thesis and Dissertation Repository

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Drs. Anita Kothari

2nd Supervisor

Catherine Ward-Griffin

Joint Supervisor

Abstract

In light of increasing system demands, system regulations, and constrained resources, those living and working with dementia in the long-term care sector are vulnerable to oppressive care practices. This is true so long as our understanding of how social power affects the ways in which dementia care knowledge is created, shared, and enacted remains limited. Based on prolonged field observations and on informal and formal interviews with care recipients, family members, and staff, the aim of this critical qualitative research was to examine the culture of dementia care knowledge in two sites: a specialized dementia care unit in a long-term home, and an affiliated adult day program.

Three key insights arise from this study. The first is that normalizing inclusiveness in generating dementia knowledge is akin to democratizing hierarchical relationships in long-term dementia care work environments; the more that knowledge is co-constructed under ethical conditions of discourse, the more point-of-care staff can contribute to care planning and provision. Second is the temporal distinction between two prominent yet somewhat contradictory care norms: that of contextualizing a responsive behavior, and that of using force to complete daily care tasks. These co-existing care routines not only contest one another, they manifest along different timelines. Third, care providers and recipients can benefit from a three-pronged approach to generating dementia care knowledge wherein an iterative pattern of internalizing, externalizing, and socializing care knowledge yields collectively held organizational knowledge.

This study re-conceptualizes “culture” in ways that consider the broader (often oppressive) social forces at play in constituting dementia care knowledge. In addition to its methodological contributions to critical qualitative health research, the study’s implications are relevant to those who espouse ethical and non-coercive dementia care practices, and to knowledge translation scholars who appreciate that as a part of context, the knowledge culture needs to be understood in terms that make clear the influence of social power among and between the culture’s constituents and the intervening knowledge translators.