The will to mobility: life-space satisfaction and distress in people with dementia who live alone

Abstract

Increasing numbers of people with dementia reside in single-person households, yet little is known of their experiences and priorities. This exploratory Australian study elicited perceptions of seven people with dementia living alone, regarding their domestic environment and its surroundings. The general aim was to identify unmet service needs in this vulnerable population. Drawing upon the theoretical concepts of ‘the will to mobility’ and ‘life-space’, we identified four factors of particular salience to our respondents. These were access to public space, social distance and proximity, changing meanings of space and objects, and imaginative co-presence. Participants provided useful insights into a soon-to-be-common scenario in which increased numbers of people with dementia will be living without a resident carer. The findings have implications for the development of more personalised and targeted dementia care in the domestic setting, more inclusive public planning and more extensive public education programmes.

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

“…By walking (and talking) we sought to encourage people living with dementia to share their lived experiences of their neighbourhood and tap into the awareness that comes from embodied movement through their ‘place-world’. Earlier studies have suggested that people with dementia experience a shrinking world following diagnosis, often as result of the progression of dementia (Duggan et al., 2008; McShane et al., 1998), however, our findings differ from this conclusion. Instead, we have taken a perspective based on a phenomenological approach (Morris, 2004; Moustakas, 1994) where we have explored the meaning of neighbourhood to be a ‘walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated’.…”

“…However, for those participants living alone, municipal home care or day care services played a more crucial role in maintaining a degree of social interaction, an insight that supports existing studies (Eichler, Hoffmann, Hertel, Richter, Wucherer, Michalowsky, Dreier, & Thyrian, 2016;Lloyd & Stirling, 2014;Svanström & Johansson Sundler, 2015). The participants living alone wanted and actively searched for new social contacts and often used their local knowledge to identify 'hubs' within the neighbourhood where social opportunities would be most likely to exist.…”

“…However, there is little research on how people with dementia experience public spaces and everyday life in the neighbourhood (Keady et al., 2012; Keady, 2014). 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, 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).…”

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

“…A number of studies have highlighted that female participants living alone with dementia expressed a sense of loneliness in the daytime more than men (deWitt, Ploeg, & Black, 2009;deWitt, Ploeg, & Black, 2010;Frazer, Oyebode, & Cleary, 2012;Lloyd & Stirling, 2015;Svanström & Sundler, 2015). This thesis confirms that a sense of loneliness and solitude was more common among women (studies II and III) especially during the daytime.…”

Towards meaningful mobility: a research agenda for movement within and between places in later life

“…Foregrounding indoor movement in mobility research in later life will enrich current debates on active and healthy ageing, as it will help to foreground that being indoors does not necessarily equal being inactive and unhealthy ( see Hitchings et al ., 2018). Also, looking at both movement within and between places will help to uncover the enabling and disabling aspects of the physical and social environment for mobility, a recommendation that has been made in earlier research as well (Mollenkopf et al ., 2011; Lloyd and Stirling, 2015; Franke et al ., 2018; Litwin and Levinson, 2018; Graham et al ., 2020; Labbé et al ., 2020). For instance, what is the role of the neighbourhood and broader community in mobility in later life?…”