‘Going out’: an embodied and emplaced practice of citizenship for people living with dementia

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’.