According to the Canadian Study of Health and Aging most of the 12,630 Canadians living with advanced dementia reside in long-term care facilities. This number is rising due to an aging population. The purpose of this study is to address an identified gap in our knowledge about what creates pleasure in people with advanced dementia, through first understanding family caregivers’ ways of eliciting and interpreting positive emotions in their relatives and then having the personal support worker (PSW) try these same approaches to see if similar responses are achieved. This study used a qualitative multiple case study design. Data collection methods included digitally recorded interviews and video-recorded observations of interactions between residents and caregivers. A case is defined as a resident with moderately to severely advanced dementia. Each case had two informants: a family member and a PSW meeting inclusion criterion. There were seven cases. The resident participants spanned a range from moderately advanced to severely advanced dementia. Data analysis used both inductive and deductive coding with sensitizing concepts of selfhood, personhood, continuity of personality and well-being.
The results of this study centred on four main themes related to the research questions about the sources and indicators of pleasure and the potential for PSWs to replicate what family members did with residents. Some sources of pleasure were lost, some were maintained and new ones developed post-illness in all of the residents. Both family members and PSWs were knowledgeable about sources and indicators of pleasure for the people with dementia they were involved with. The analysis demonstrated that for individuals with very advanced dementia, the concept of pleasure or enjoyment is not applicable. The family members of the two residents with very advanced dementia used music, touch and sweets to elicit a pleasurable response but the resident did not display indicators of pleasure in response; instead, the residents responded with grasping or other responses which require further research to understand fully. Future research should build upon these findings in order to further understand the concept of positive affect: pleasure, interest and enjoyment in people with advanced dementia of the Alzheimer type.
| Identifer | oai:union.ndltd.org:LACETR/oai:collectionscanada.gc.ca:OTU.1807/17816 |
| Date | 25 September 2009 |
| Creators | Persaud, Malini |
| Contributors | Pringle, Dorothy |
| Source Sets | Library and Archives Canada ETDs Repository / Centre d'archives des thèses électroniques de Bibliothèque et Archives Canada |
| Language | en_ca |
| Detected Language | English |
| Type | Thesis |
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