‘We have different routes for different reasons’: Exploring the purpose of walks for carers of people with dementia

Abstract

This paper explores the purpose of walks for co-residing carers of people with dementia, using a social citizenship lens. The findings are based on the first phase of a study examining the everyday experiences of place, space, and neighbourhood of dementia carers. Using three forms of data collection -social network mapping, walking interviews, and participant-driven photography -the study brings forth information about why carers go on walks either alone or with the person with dementia. Carers explained that walks facilitate their connections with themselves, the person with dementia, their social environment, and their natural and built environment. In sum, walks provide a way of practicing and sustaining social citizenship. Carers' discourse about walks highlights their personal, everyday practices and strategies, as well as the larger tensions and contradictions of dementia care. The findings reinforce the need to bring into dialogue, from a carer perspective, a social citizenship model of dementia with the growing interest in dementiafriendly communities.

‘Overjoyed that I can go outside’: Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia

“…One message from a number of studies has been that following diagnosis, people experience a "shrinking world" and as the condition progresses so access to the neighbourhood as both a physical and social space decreases (Duggan, Blackman, Martyr, & Van Schaik, 2008;McShane, Gedling, Keene, Fairburn, Jacoby, & Hope, 1998). Caregivers have also been found to experience something of a shrinking world, as social relationships and activities become limited due to increasing caring responsibilities (Silverman, 2017;Ward et al, 2012). However, it has been argued that for informal caregivers, the experience of a shrinking world can be challenged by walks in the neighbourhood; the act of walking itself supports social relationships and connection with the neighbourhood (Silverman, 2017).…”

“…Caregivers have also been found to experience something of a shrinking world, as social relationships and activities become limited due to increasing caring responsibilities (Silverman, 2017;Ward et al, 2012). However, it has been argued that for informal caregivers, the experience of a shrinking world can be challenged by walks in the neighbourhood; the act of walking itself supports social relationships and connection with the neighbourhood (Silverman, 2017). Regarding access to the neighbourhood, studies have shown that people with dementia can often adapt to and manage different types of situation in public spaces such as grocery shopping and crossing busy road intersections (Brorsson, Ohman, Lundberg, Cutchin, & Nygard, 2018;Brorsson, Ohman, Lundberg, & Nygard, 2011).…”

“…The research has begun to reveal how people's identities are embedded in the neighbourhood. Hence, people with dementia and informal caregivers value the neighbourhood as a place that supports a sense of belonging, through social connections (Silverman, 2017;Ward et al, 2017).…”

Neighbourhood nursing : connection, place and meaning in the everyday experience of dementia

“…A body of research has shown that social citizenship can be supported through everyday practice such as daily walks in a group or with a partner (Bartlett & O'Connor, 2010;Kelson, Phinney, & Lowry, 2017;Phinney, Kelson, Baumbusch, O'Connor, & Purves, 2016;Silverman, 2019) or participating in a group can enable everyday talk and build confidence (Ward, Clark, & Hargreaves, 2012;Wiersma & Denton, 2016). In this thesis, social citizenship is based on the definition of Bartlett and O'Connor (2010) but extended out to the neighbourhood context and neighbourhood nursing.…”

“…From the point of view of caregivers, several studies have shown that they also experience a shrinking world, because caring responsibilities take over social relationships and activities (Silverman, 2019;Ward et al, 2012). A recent study by Li, Keady and Ward (2019) showed that couples where one has a dementia diagnosis hold on to neighbourhood connections through emotional and biographical attachment to places.…”