5 results
5 - Making and maintaining neighbourhood connections when living alone with dementia
- Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
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- Book:
- Dementia and Place
- Published by:
- Bristol University Press
- Published online:
- 13 May 2022
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- 24 September 2021, pp 67-89
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Summary
Introduction
This chapter draws on qualitative research using participatory methods to explore the experience of people with dementia who live alone. Drawing on data gathered in Sweden and the UK, the chapter highlights the distinct challenges of living alone with dementia and explores the different ways that people remain connected to neighbourhood places. We argue that the invisibility of such experiences to dementia policy and strategies (which typically assume the presence of a cohabiting carer or household member to provide support) needs to be addressed if dementia-friendly initiatives are to be truly inclusive.
Demographic projections show that the number of people living in single households will continue to increase steadily in many western and northern European countries and that older women are the fastest-growing section of the single householder population (Sundström et al, 2016; United Nations, 2017). The ageing population living alone in Europe also includes an increasing proportion of people with dementia (Prescop et al, 1999; Gaymu and Springer, 2010; Prince et al, 2015). In Canada, France, Germany, the UK and Sweden, between one third and one half of the population of people with dementia residing in a neighbourhood context live in single households (Ebly et al, 1999; Nourhashemi et al, 2005; Alzheimer's Society, 2013; Eichler et al, 2016; Odzakovic et al, 2019). Despite this increase in single householders with dementia, there is currently limited awareness of the particular challenges associated with living alone with dementia, even within emerging discourses and practices associated with dementia-friendly communities (Alzheimer's Society, 2013; Age UK, 2018; Odzakovic et al, 2018). As such, there is a danger that the creation of ‘dementia-friendly’ communities, and especially those based on communities of place, may rest upon a series of normative assumptions about dementia and about the relational context of people living with the condition.
Evidence from service-oriented research shows that people with dementia who live alone are more prone to (unplanned) hospitalisation (Ennis et al, 2014); are at greater risk of malnutrition (Nourhashemi et al, 2005); are likely to be admitted to long-term care at an earlier point in their journey with dementia (Yaffe et al, 2002); are often less well connected to formal services (Webber et al, 1994); and lack the advocacy of a co-resident carer (Eichler et al, 2016).
7 - Enabling the neighbourhood: a case for rethinking dementia-friendly communities
- Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
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- Book:
- Dementia and Place
- Published by:
- Bristol University Press
- Published online:
- 13 May 2022
- Print publication:
- 24 September 2021, pp 94-112
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Summary
Introduction
Neighbourhoods have been integral to the rapid changes occurring within dementia care in recent years, although have not always been acknowledged as such. Dementia, like aged and mental health care before it has been absorbed into a project of deinstitutionalisation occurring within healthcare systems across much of the affluent west (Anttonen and Karsio, 2016). In the UK, deinstitutionalising dementia has involved large-scale reductions to hospital beds available to people with dementia and reduced duration of stay (Alzheimer's Society, 2009). In basic terms, it has meant the relocation of care and support from one type of material and social setting to another, and as such marks a changing geography of care. In many parts of Europe, this ‘re-placing’ of dementia care has not stalled at the shift to community-based support. The ongoing retrenchment of public services driven by a policy of fiscal consolidation (that is austerity) has led to widespread closures of traditional council-led day care services (Needham, 2014) alongside tightening of eligibility criteria for admission to care homes and for Continuing Health Care (RCN, 2012), resulting in significant reductions in collective forms of community-based provision. People with dementia are increasingly less likely to be clustered in designated care settings while segregated from the wider community. Instead, policy intentions have shifted to supporting people to age in place through a focus on Personalisation (DoH, 2019; Malbon et al, 2019; Manthorpe and Samsi, 2016). However, as with aged care before it, concerns have been raised over the extent of an existing neighbourhood infrastructure to adequately respond to such changes in dementia care (for example, Miranda-Castillo et al, 2010). The potential danger is that people living with the condition may become, in Rowles’ (1978) terms, ‘prisoners of space’; facing the prospect of social isolation and domestic confinement as their lifeworld constricts (Alzheimer's Society, 2013; Moyle at el, 2011).
The advent of the ‘dementia-friendly community’ (DFC), following in the wake of the age-friendly cities movement (WHO, 2007), might be read as a vehicle for policy to address these concerns. Interestingly in the UK, the approach differs between countries. In Scotland, dementia is a devolved matter, with the Holyrood government setting policy which acknowledges the importance of DFCs through the National Dementia Strategy (Scottish Government, 2017).
2 - Understanding the meaning of neighbourhoods for people living with dementia: the value of a relational lens
- Edited by Richard Ward, University of Stirling, Andrew Clark, University of Salford, Lyn Phillipson, University of Wollongong, Australia
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- Book:
- Dementia and Place
- Published by:
- Bristol University Press
- Published online:
- 13 May 2022
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- 24 September 2021, pp 23-43
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Introduction
This chapter explores what neighbourhoods mean for people living with dementia. While the built environment, and the economic and political apparatus they comprise of such as shops, services and localised campaigning, are certainly important, our attention focuses on how people living with dementia understand neighbourhoods as sites of relationally constituted ordinary or everyday social connection, engagement and interaction. The chapter outlines the nature of associations individuals have with the wider social sphere of their immediate locale and considers how these ostensibly geographical proximate (or local) social connections might support people to live as well as they might with dementia. In doing so, it considers why it matters to understand the socio-spatial dimensions of neighbourhoods as relational and interconnected phenomena and considers the importance of thinking about neighbourhoods as more than environments in need of intervention or modification in order to support people living with dementia.
How are neighbourhoods understood in the dementia literature?
In a review published in 2012, Keady and colleagues noted that a surprisingly small amount of literature has focused specifically on the importance of neighbourhoods for people living with dementia. The review identified three domains of activity: outdoor spaces, the built environment, and everyday technologies. The first examines how the outdoor environment can be better designed and/or modified to support people living with dementia. This includes work on the design of streetscapes and road layouts to better support mobility, as well as ongoing work to enable easier access to a range of different environments such as green and recreational spaces. A second attends to navigation and mobility of environments, such as shopping centres, hospitals, museums and grocery stores. The third investigates the use of technologies, including virtual realities, to support access to, or better develop, environments beyond the home (Keady et al, 2012). Since then, a considerable body of work has continued to investigate these areas (Sturge et al, 2021) and continues to provide evidence of the need to better understand why and how people living with dementia interact with their immediate environments outside of the home.
Beyond the shrinking world: dementia, localisation and neighbourhood
- Richard Ward, Kirstein Rummery, Elzana Odzakovic, Kainde Manji, Agneta Kullberg, John Keady, Andrew Clark, Sarah Campbell
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- Journal:
- Ageing & Society / Volume 42 / Issue 12 / December 2022
- Published online by Cambridge University Press:
- 22 March 2021, pp. 2892-2913
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- December 2022
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‘Dementia-friendly communities’ herald a shift toward the neighbourhood as a locus for the care and support of people with dementia, sparking growing interest in the geographies of dementia care and raising questions over the shifting spatial and social experience of the condition. Existing research claims that many people with dementia experience a ‘shrinking world’ whereby the boundaries to their social and physical worlds gradually constrict over time, leading to a loss of control and independence. This paper reports a five-year, international study that investigated the neighbourhood experience of people with dementia and those who care for and support them. We interrogate the notion of a shrinking world and in so doing highlight an absence of attention paid to the agency and actions of people with dementia themselves. The paper draws together a socio-relational and embodied-material approach to question the adequacy of the shrinking world concept as an explanatory framework and to challenge reliance within policy and practice upon notions of place as fixed or stable. We argue instead for the importance of foregrounding ‘lived place’ and attending to social practices and the networks in which such practices evolve. Our findings have implications for policy and practice, emphasising the need to bolster the agency of people living with dementia as a route to fostering accessible and inclusive neighbourhoods.
‘It's our pleasure, we count cars here’: an exploration of the ‘neighbourhood-based connections’ for people living alone with dementia
- Elzana Odzakovic, Agneta Kullberg, Ingrid Hellström, Andrew Clark, Sarah Campbell, Kainde Manji, Kirstein Rummery, John Keady, Richard Ward
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- Journal:
- Ageing & Society / Volume 41 / Issue 3 / March 2021
- Published online by Cambridge University Press:
- 30 September 2019, pp. 645-670
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- March 2021
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The extent of social isolation experienced by people living with dementia who reside in the community has been well acknowledged, yet little is known about how people living alone with dementia maintain neighbourhood-based connections. The purpose of this study is to examine the experiences of people with dementia who live alone, focusing upon how they establish social networks and relationships in a neighbourhood context, and how they are supported to maintain this social context within everyday life. Multiple data collection methods were used including, semi-structured interviews, walking interviews, guided home tours and social network mapping, which were conducted with 14 community-dwelling people living alone with dementia (11 women and three men) situated across the three international study sites in England, Scotland and Sweden. Data were analysed using thematic analysis. The analysis revealed four main themes: (a) making the effort to stay connected; (b) befriending by organisations and facilitated friendships; (c) the quiet neighbourhood atmosphere; and (d) changing social connections. The analysis suggests that people with dementia who live alone were active agents who took control to find and maintain relationships and social networks in the neighbourhood. Our findings indicate the need to raise awareness about this specific group in both policy and practice, and to find creative ways to help people connect through everyday activities and by spontaneous encounters in the neighbourhood.