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What is yet to come? Couples living with dementia orienting themselves towards an uncertain future

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Dementia is a chronic illness that not only has substantial effects on the life as well as future for the individuals diagnosed, but also affects those with whom these individuals… Click to show full abstract

Dementia is a chronic illness that not only has substantial effects on the life as well as future for the individuals diagnosed, but also affects those with whom these individuals have relationships. This has implications that need to be addressed by professional practice, not least since social work research has shown that the support available for couples managing dementia is insufficient. There are few studies today of how couples jointly talk about their future with dementia and how they adapt to it as a couple and as individuals. Therefore, this article explores how couples in which one of the spouses has a diagnosis of dementia jointly talk about an uncertain future with dementia. The study benefits from using the conversation analytic method when studying video-recorded interactions among 15 couples living with dementia. The results show that either or both spouses can actively request knowledge about the progression of dementia, but at the same time, the spouses without dementia express awareness of the uncertainty that is connected to a future with dementia. Moreover, either or both spouses may also express contentment with “not knowing.” In all examples, one or several of the participants alternate between taking epistemic stances of knowing and unknowing as well as ascribing stances to others, and spouses can display similar or oppositional stances. The findings suggest a need for developing communicative practice for couples to jointly talk about dementia, as well as a need for social workers to find ways of providing emotional support.

Keywords: uncertain future; future dementia; living dementia; jointly talk; dementia; couples living

Journal Title: Qualitative Social Work
Year Published: 2019

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