‘Going out’: an embodied and emplaced practice of citizenship for people living with dementia
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Date
10/06/2022Author
Gambier-Ross, Katie
Metadata
Abstract
The current estimate of people living with a diagnosis of dementia in the UK
is 850,000 with over two-thirds living in the community. Supporting people to
age in place is vital as formal care services will struggle to meet the needs of
projected increasing numbers of people with dementia. However, there is a
lack of evidence regarding how people living with dementia engage in their
community. While being outdoors is an important part of living well and
engaging with the community, people with dementia face increased risks
when ‘going out’ compared to people without dementia. One of these is the
increased risk of getting lost and/or being reported missing to police.
Complex cases of people with dementia reported as missing have a high
mortality rate, place a high burden on police resources and can result in
immense stress for the individual and their family. Research on dementiarelated
missing incidents has explored newspaper reports, police records or
conducted proxy tests. Whilst there is research on the lived experience of
missing adults, people living with dementia have been excluded from these
studies. Research to date related to lived experiences of people with
dementia who live at home has focused on how they feel part of a local
community or neighbourhood. Therefore, this research aimed to bridge the
gaps across these two areas of research by examining the everyday practice
of ‘going out’ for people with dementia and their care partners who live at
home. It also aimed to consider how they can be better supported to maintain
the everyday practice of ‘going out’.
This constructivist inquiry employed repeat walk-alongs, interviews and group
discussions with 19 people with dementia and 19 care partners across
Scotland. In this thesis, I present the data under four broad themes relating to
participants’ experiences of ‘going out’: making adaptive decisions to
maintain independence and control; relational agency; feeling part of a place;
and challenges and coping strategies. In addition, I used thick descriptions to
provide in-depth accounts of the walk-alongs with seven participants,
highlighting how ‘going out’ is an embodied and emplaced practice for people
with dementia.
Drawing on these findings, I developed the 3 P’s (practices, people and
places) as a heuristic tool for understanding people’s motives and strategies
for ‘going out’. The 3 P’s puts the person with dementia at the heart of
decision-making in the context of ‘going out’. It considers the heterogeneity of
experiences of dementia and can be used to inform prevention and response
strategies in dementia-related missing incidents.
Empirically, this thesis contributes novel insights to the experience of ‘going
out’ for people living with dementia, understood through practices, people
and places. Therefore, I suggest a shift away from the categorisation and
management of missing incidents for people living with dementia. Instead,
when preventing and responding to missing incidents, we need to shift the
focus away from their dementia specifically and onto the broader person
through the practices, people and places they engage with. The 3 P’s can be
used for future prevention and response strategies for people with dementia
who are at risk of going missing. Theoretically and methodologically, this
inquiry brings a social citizenship lens to the predominantly biomedical field
of dementia and missing research. It also furthers the citizenship-in-and-aspractice
approach in dementia studies through the application of an
embodiment and emplacement lens to the practice of ‘going out’.