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

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.

Speaking for and about a spouse with dementia: A matter of inclusion or exclusion?

“…In a previous study, Nilsson and Olaison (2017) emphasised the sensitivity connected to couples’ talk about dementia, and how the spouses without dementia may especially struggle when talking about troubles associated with their partner’s conditions, something that is also seen in Vilgot’s talk here. Starting from line 5, there is a shift in Vilgot’s talk, which is now characterised by hesitations, cut-offs and restarts (lines 5–7) as well as mitigating expression ‘nog rätt viktit’ (‘probably quite important’, lines 5–8), something that indicates a potentially heightened degree of sensitivity of the topic (Labov and Fanshel, 1977; Pomerantz, 1984; Van Dijk, 1984).…”

Living in uncertainty while a spouse is undergoing a cognitive assessment: Voices of women care partners

“…Uncertainty has been frequently described in research concerning the experiences of persons with cognitive impairment and their care partners (e.g. Campbell et al, 2016 ; Nilsson & Olaison, 2019 ; Stokes et al, 2015 ; Van Wijngaarden et al, 2018 ). However, few studies have applied a theoretical framework.…”

The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs

“…The findings suggest a need for balance in respect of the time-orientation of information, with diversity among participants regarding the information they want and feel able to receive. For some, limiting information to that which is relevant to their present circumstances is an important means of avoiding anxiety and feeling overwhelmed; others have more 'future-focussed' orientations, and are receptive to information which enables them to prepare and plan for the future (Ashworth, 2020;McKechnie et al, 2014;Nilsson and Olaison, 2017;Stokes et al, 2014). Clare (2002, p. 146) has underscored the importance of individuals being able to access the information they need, without detail which they cannot bear, and the need to 'find a balance between hope and despair'.…”