This research investigated the way that caring partners understand managing communications with their spouses diagnosed with dementia. It also explored the ways that caring partners perceived how these communication strategies might change as dementia progressed. This is important as dementia prevalence increases and places additional strain not only on health and social care services, but also on spousal carers. The study was longitudinal, undertaken using qualitative methodology, including semi-structured interviews, weekly observation and filming during creative workshops. The creative workshops were run by a charity for people with dementia and their carers, to work together. I worked as an artist facilitating visual art projects for the charity. Eleven spousal couples participated, whose marriages were long-standing and all over forty years in length. In all, 30 interviews were undertaken, and 69 short films recorded, over a period of three years. Participants were interviewed up to four times, with intervals of approximately six months between them. Filming was undertaken concurrently with interviews. The data were analysed using thematic analysis, narrative analysis, longitudinal analysis, and vignettes. Four aspects of managing communication by Caring Partners have been found in my research: they understood that they used different approaches relating to their multiple roles, including supervisor, teacher and parent; Caring Partners used their “insider” understanding including being engrossed in their Cared for Partners, understanding paralanguage and giving reassurance; they managed tasks using scaffolding; and their understanding of how they managed communication changed over time, but some strategies were perceived to be used consistently. These evidence the complex and flexible ways that caring spouses experienced managing communications with their spouses diagnosed with dementia. The agency of the person with dementia was also identified as having a substantial impact upon spousal communication in dementia. I make recommendations for training and support in managing communications to be offered to carers of persons with dementia, using trainers aware of engrossment and scaffolding.
Date of Award | 8 Oct 2024 |
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Original language | English |
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Supervisor | Carole Smith (Main Supervisor) |
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