Blog Post in regard to: James Rupert Fletcher 2019 (Online First). “Distributed Selves: Shifting Inequities of Impression Management in Couples Living with Dementia.” Symbolic Interaction.
If you had dementia, would you tell people? This question is at the heart of my new paper in Symbolic Interaction, focusing on how couples with dementia negotiate impression management and the presentation of selves.
Among the many challenges that dementia presents, those affected can struggle to navigate the perceptions of other people. This is particularly challenging when couples disagree over how they would like to be seen by others. In my study, people with dementia wanted to conceal their diagnoses from other people, but carers wanted to be more open. People with dementia adopted various strategies for concealing their dementias, but as cognitive decline progressed, it became harder to hide. They became increasingly reliant on their carers to support their performances, and as carers gained greater influence, impression management shifted toward their preferences. This creeping inequity was made more problematic by symbolic and institutional responses to dementia, exacerbating tensions.
Diagnosis was one example of this. Diagnosis was typically driven by the carer, sometimes against the wishes of the person diagnosed. Discrepancies in the desirability of diagnosis reflect the different ways that diagnosis works for those affected. Participating carers described feeling validated by diagnosis and eliciting sympathies from others. There were also practical benefits, such as free gym classes and extra-fast car breakdown services. Conversely, participants with dementia were ashamed of having such an infamous condition, and suffered institutional disadvantages such as having their driving licenses revoked. Dementia placed everybody in unenviable positions, yet while diagnosis offered carers some meagre benefits, it compounded the situations of those with dementia.
This intensification of tensions in couples with dementia is important in the context of campaigns to promote diagnosis and awareness. Without effective treatments, the merits of this strategy depend on societal responses to dementia. In an ideal world, diagnosis would lead to services rather than shame, giving couples less reason to contest how best to engage with dementia. I hope this paper helps readers to reflect on the problems faced by couples with dementia, and to consider how we might ease some of them.