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).

Is there somewhere that dementia belongs? If we had asked this question 20 years ago doubtless the weight of responses would have emphasised institutionalised settings: hospitals, clinics and care homes. Such places would likely be secured, perhaps bounded by fences – places of containment and segregation (Steele et al, 2019), of care, but also control (Ward et al, 2008; Kelly and Innes, 2013). They may even be places where the occupants desired to be elsewhere, congregating at the doors or at the edges of the building (Chalfont, 2008), perhaps even making a bid to escape (Chatterji, 1998; Bartlett, 2007). It is far less likely those responses would have foregrounded outdoor or public spaces. Indeed, commentators writing at the turn of the new century were keen to highlight that public spaces were rarely considered appropriate for people with dementia (Blackman et al, 2003). On the whole, biomedically informed research on dementia considered independent movement beyond the home to be fraught with risk, often focusing on the prevalence and frequency of people with dementia becoming lost, but without considering what role the environment itself might have played in these situations (for example, McShane et al, 1998). Silverstein and colleagues (2002) captured the caring but paternalistic and risk-averse mood of the time: ‘If someone with dementia can walk, that person can wander and become lost. If someone with dementia is missing, that person is lost. And if someone with a dementia is lost, that person is at risk of harm’ (p 7).

Fast-forward to the end of the first quarter of the 21st century and much has changed. Arguably, if we posed our question now a more diverse set of responses would ensue. Hopefully a more diverse range of people would feel entitled and enabled to offer their perspective, revealing that ways of engaging and eliciting the direct views of people living with dementia have in themselves evolved a great deal (for example Keady et al, 2017). Yet, arguably the legacy of efforts to ‘place dementia’ still inhabit approaches to the condition. Consider, for example, the everyday language of dementia care practice, talk of ‘admission and discharge’, of being ‘allocated a bed’, ‘awarded a place in day care’ or deemed ‘eligible for respite’.

Thinking through dementia and place

In the Introduction to this book, we proposed that dementia and place are co-constitutive, discursively and experientially, but to date this relationship has yet to be given full consideration. This is not to overlook an extensive tradition of research into dementia and the environment, but rather to suggest that an explicit focus on how dementia comes to shape understandings and experiences of place, and vice versa, remains underdeveloped in the field of dementia studies. The preceding chapters find common ground or, more accurately, share a common starting point, of seeking to understand experiences of dementia through the locational lens of the neighbourhood. Yet while most of the chapters start out from here, few end up at the same end point. In part, this may be because a neighbourhood is a somewhat slippery concept, implying simultaneously a scale of perspective as well as a lived phenomenon worth investigating. Indeed, what emerges overall is how neighbourhoods can offer a particular position from which to enhance our understanding of life with dementia and, in turn, of how living with dementia provides sometimes unique and valuable ways of knowing what neighbourhoods are about.

The chapters demonstrate the diversity of theoretical and conceptual thinking about how we might approach and understand place-based experiences for those living with dementia. They also inform and extend the conceptual and theoretical stock of dementia studies, drawing on ideas already in circulation, such as personhood and social citizenship (Chapter 10), and borrowing from other disciplines and perspectives, such as transactional perspectives and place integration (Chapter 4), relational space (Chapter 2), models of social health (Chapter 11) and performativity (Chapter 7). The need for renewed attention to conceptual thinking about people in ‘local’ environments is explicitly seen in Seetharaman and colleagues’ (Chapter 8) exploration of the dynamic relationship between the person living with dementia and neighbourhood environments, which seeks to better integrate the physical and psychosocial dimensions of the neighbourhood environment in people's lives. The result there, and indeed across the book, are attempts to think differently not so much about life with dementia, but about life with dementia in and through place.

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).

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.