Date of Award

5-2004

Degree Type

Thesis

Degree Name

Doctor of Philosophy (PhD)

Department

Nursing

Supervisor

Dr. Jennifer Skelly

Abstract

This dissertation was undertaken to scrutinize the positions of professional and family care givers in response to the sexual behaviours of persons living with dementia in three long term care facilities. In keeping with the tenets of critical ethnography and critical social theory, the intent was to identify response patterns that might need to be altered to reflect a person-centred dementia care philosophy (Kitwood, 1997, 1998). Semi-structured interviews, focus groups, and document review provided the material through which the rules, moral codes and actions in response to sexual behaviours were explicated. Ethnographic data transformation was undertaken through a process of description, analysis and interpretation. The most striking findings of this research were: a) the response patterns were conservative, protectionist and linear, ultimately leading to sexual expression being forbidden or admonished; b) There was a lack of organizational support so that study participants were operating within a vacuum. Consequently, participants relied upon their own value and belief systems when responding to sexual behaviour, leading to practice inconsistencies; and c) There was an overwhelming culture of silence in regard to the sexual behaviour of persons with dementia. The reluctance and discomfort, with which both staff and families approached sexual expression of residents with dementia, resulted in collusion that ensured sexual expression remained closeted and repressed. Study findings suggest that the culture of censorship and silence surrounding sexuality in persons with dementia remains similar to the centuries-old viewpoint requiring strict moral controls (Foucault, 1978). Evolving from the participants' accounts, an alternative approach involving collective dialogue is suggested. Implications of these findings extend to the need to expand organizational cultural perspectives through practice guideline development, educational initiatives and further research so that they come into alignment with the person-centred approaches that acknowledge the humanity, value and worth of those living with a dementia.

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