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Conceptualising the experience of loss and meaning-making in caregiving in dementia

By Karen Mary Moore


An initial review of the literature concerning anticipatory grief was executed to foreground a qualitative study focusing on the experience and conceptualisation of loss by adult daughter caregivers in dementia. A chronological overview was presented and key studies and major developments identified. Inconsistencies in empirical findings were summarised; and preceded a consideration of methodological issues including: problematic research design and definitional confusion regarding conceptual underpinnings. Key recommendations for further research were made.\ud \ud The main study adopted a grounded theory methodology and sought to explore the nature and process of losses experienced by daughters providing care for a mother with dementia. Open, in-depth interviews (N=10) functioned as the primary data source for analysis. Further data included: participant notes and letters; demographic details; researcher's notebooks and reflective and analytical memos. Concurrent data collection and analysis proceeded, in three phases, and the resulting, emergent, theoretical model was presented using Strauss and Corbin's (1990) framework. A full explication of the model followed and its relationship to relevant literature elucidated. Implications for clinical practice and further research were addressed.\ud \ud In the course of analysis it was noted that caregivers made reference to existential themes in their accounts of caregiving. This precipitated a further study in which Reker and Wong's (1988) dimensional model was used to guide the content analysis of the existing transcribed interview data. Findings indicated that participants expressed existential themes at both an implicit and explicit level. Considerable breadth, depth and diversity was observed in relation to caregiving experienced. Caregiving appears to pose both existential challenges and opportunities for growth. Implications for clinical practice and further research were identified

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