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).

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.

Introduction

Social rights can be conceptualised as the enforceable choice to access resources to meet your needs. Marshall maintained that social rights distributed through the welfare state were an important measure of a mature citizenship-based society, after political and civil rights (Marshall, 1950). Since its inception, disabled people have had an uneasy relationship with the welfare state as the means of distributing these resources. On the one hand, the foundations of the post-war UK welfare state gave disabled people important rights to access state welfare, health and education, as well as sheltered employment and accessible housing. On the other hand, the paternalism associated with the rise of the power of the welfare professional meant that disability is, as Stone (1986) argues, an administrative category that requires access to be decided not on the basis of enforceable choices decided by individual citizens, but on the basis of need defined by professionals. Over 70 per cent of welfare costs go towards the salaries of welfare professionals rather than directly meeting needs.

Prior to 1997, two developments in post-1980s’ disability policy had a particularly significant impact on disabled people. The first was the NHS and Community Care Act 1990. Prior to this, low-income disabled people had the right to use their income support payments to access residential care, without any assessment of their needs. Although this was arguably a limited ‘right’ (in that it was to a segregated form of living that would not necessarily be the first choice for most disabled people), it was not contingent on the gatekeeping or assessment of welfare professionals. This led to a growth in demand, so the 1990 Act introduced care management, whereby services were shifted to the community wherever possible but access was gatekept by welfare professionals (local authority care managers, usually social workers), who ensured that only those ‘in need’ of services were given them. This did not place disabled people in control of their care or support, despite the fact that they were usually asked to pay service charges as a contribution (Rummery and Glendinning, 1999).

Further developments in the provision of community care services followed.

Introduction

During the independence referendum campaign, childcare policy became a key and salient issue in the debate. The Scottish Government (2013) used its White Paper on Scottish independence to argue the case that childcare policy would improve under independence and would be part of an overall strategy to grow the Scottish economy. What was largely missing from the debate was how childcare could become part of a wider infrastructure investment to help foster a more gender-equal society in Scotland. Childcare provision has been a devolved competence since 1999, but the devolution of the income tax bands and rates opens up the potential for additional capacity in childcare to provide for an increase in the number of hours worked by parents, mostly mothers. Although childcare in Scotland does differ from childcare provision elsewhere in the UK in some important respects, the mixed model approach with a predominance of the private sector is common to both Scotland and the rest of the UK. Funding of childcare is predominantly ‘demand side’, meaning that parents are subsidised through the social security system rather than the bulk of investment going into providing the services themselves.

During the independence referendum, the Scottish Government's (2013) White Paper outlined that, in an independent Scotland, a more ‘Nordic’, supply-side approach would be adopted in order to boost maternal employment levels and thus generate higher income tax yields. Scotland voted No to independence, but the Scottish Government has remained committed to investing in childcare services. Much of the Scottish Government's arguments around childcare during the referendum centred on the notion that any increase in revenues generated as a result of increased provision would not accrue to Scotland. However, near full devolution of income tax is imminent and there now exists an incentive for the Scottish Government to reform Scotland's childcare system towards a supply-side model.

The purpose of this chapter is twofold. First, an overview of the literature on childcare policy presents a picture of which policy routes are best suited for the promotion of a more gender equal society. Second, the chapter outlines the opportunities and constraints that now exist following the devolution of further powers to Scotland for the furthering of gender equality.

Introduction

As is widely discussed in this book, policies under the post-2010 Conservative–Liberal Democrat coalition government were dominated by the spectre of the 2008 private sector financial crisis, which by 2010, had turned into a global recession, reducing economic production and seeing rises in unemployment. The UK, in common with other G20 countries, initially adopted a fiscal stimulus approach (quantitative easing), which slowed the recession but led to a sharp rise in the budget deficit, to 11.6% in 2009/10 (ONS, 2010), the highest since 1945. What had started out as a private financial crisis was very quickly turned into a crisis of public policy, particularly in countries such as Ireland and Greece, which found it difficult to borrow money at preferential rates to service their growing deficits.

The coalition government that came to power in 2010 took the position that addressing the deficit was an economic necessity, and social policy therefore followed this aim (see Chapter Two). The primary mechanism used to achieve this was cuts to public expenditure – a policy paradigm that has come to be known as ‘austerity’. The 2010 Comprehensive Spending Review detailed how these cuts would be distributed across departments (see Table 14.1).

However, simply examining the scale of the cuts by department masks the fact that they fell disproportionately on certain groups of people. Those dependent on the state for a proportion or the whole of their income were more affected by the changes than the average: while an estimated 21% of people in the UK are living in poverty, they are bearing the brunt of 39% of the funding cuts. Moreover, over half the cuts fell on social security and local government, despite them making up only 27% of central government expenditure – and 60% of local government expenditure goes on social care for children and adults (Duffy, 2013). The purpose of this chapter is to examine the impact that this paradigm and the policies introduced by the coalition government had on four groups of people who are at risk of inequality, poverty and social exclusion: women, working-age disabled people, older people and young children. Data were not easily available to assess the impact of policies on people from minority ethnic groups, but, where possible, the cumulative impact of intersectionality, that is, where equalities issues such as gender, disability, age and ethnicity intersect, is discussed.

In this year's Social Policy Review (SPR) we are pleased to be able to both keep to, and break with, tradition, in the time-honoured fashion that makes social policy as a discipline robust and challenging. We have kept our three-part structure, focusing on developments in the welfare state, a selection of papers commissioned from the Social Policy Association (SPA) annual conference, and a final section on the theme chosen by the editorial team – this year our theme is the issue of the rescaling of social policy and the governance challenges that presents to the welfare state. However, we have also taken the opportunity of the sixtieth anniversary of what many commentators recognise as the ‘founding’ of the modern welfare state in the UK – the instigation of the Beveridge reforms to tackle the ‘five evils’ – to commission a series of papers for the first section that take a much broader historical and theoretical overview of welfare developments than our usual annual focus. We hope our readers will find this a particularly useful resource, particularly as the social and economic climates in 2008–09 appear to indicate that the welfare state is about to experience the kind of upheaval we last experienced in the restructuring and rescaling of the 1970s. When our grandchildren come to edit Social Policy Review 81 in 2068 and reflect on the 120th anniversary of the Beveridge reforms, we trust this edition will prove an interesting marker in the development of welfare policy. We hope this is not misplaced confidence in the enduring significance of the welfare state and social policy.

Part One: Tackling Beveridge's ‘five evils’, 60 years on – Kirstein Rummery

Past editions of SPR have focused on giving readers a considered ‘round-up’ of contemporary developments in the ‘five pillars’ of the UK welfare state: social security, employment, education, health and housing. In the past few years the editors have struggled with this structure, as it no longer reflects the complexity of the modern welfare state, nor the contemporary issues it faces. Rather than trying to broaden the scope of this section to include every branch of the modern welfare state, we have chosen this year to take a more thematic, historical and theoretical approach.