There's No Place Like Home: Place and Care in an Ageing Society

Christine Milligan

• Publisher: Routledge
• Year: 2016
• eBook ISBN: 9781317010685
• Edition: 1
• Topic: Physical Sciences
• Subtopic: Geography
• Index: Geography

Against a background of debate around global ageing and what this means in terms of the future care need of older people, this book addresses key concerns about the nature and site of care and care-giving. Following a critical review of research into who cares, where and how, it uses geographical perspectives to present a comprehensive analysis of how the intersection of informal care-giving within domestic, community and residential care homes can create complex landscapes and organizational spatialities of care. Drawing on contemporary case studies largely, but not exclusively from the UK, the book reviews and develops a theoretical basis for a geographical analysis of the issue of care. By relating these theoretical concepts to empirical data and case studies it illustrates how formal and informal care-giver responses to the changing landscape of care can act to facilitate or constrain the development of inclusionary models of care.

Chapter 1
Introduction

Care for frail older people often involves not just one story or narrative, but several, each evolving over time and space.

Despite the increased interest in informal care in recent decades, the concept itself is not new. The UK for example, as with many advanced capitalist countries, has long had a mixed economy of care in which the state, the family, the voluntary sector and the market are seen to play different roles at different times. Indeed, Offer (1999) went so far as to claim that the ‘classic welfare state’ (as epitomised by Britain between 1945 and 1976) should be seen as exceptional rather than a culmination of earlier ideas and practices. Rather than a recent ‘discovery’, then, the ‘re-discovery’ of informal care by political and academic communities – particularly since the late 1970s – has emerged at a time when idealist conceptions about the nature of ‘real welfare’ have been discarded.

Three significant factors have contributed to the raising of state and professional interest in informal care, particularly within advanced capitalist societies. First, global ageing – whilst this is a worldwide phenomena, many advanced capitalist states are seeing a particular growth in the 75+ age groups. Indeed, recent figures from the UK Office of National Statistics reveal that for the first time ever the country has more pensioners (defined as those aged 65+) than under-16s (ONS 2008). Whilst many older people do not require care, it is nevertheless true that advancing age increases the likelihood of frailty and hence the potential need for care and support (Williams and Cooper 2008). Second, within many neoliberalising states there has been a widespread erosion of public sector support services over the last two decades or so in favour of a mixed economy of care. This includes an elevated role for the private and third sectors, underpinned by attempts to reinvigorate ‘responsible citizenship’. If we accept Offer’s interpretation of the rise of the welfare state, such shifts in care can be seen as a return to the prevailing status quo. Both of the issues referred to above should be interpreted alongside a third shift – an ideological turn towards ‘ageing in place’. This shift has taken root in many advanced capitalist states over the latter half of the twentieth century. It has been underpinned by policies and supports designed to enable older people to remain in their own homes as long as possible, with the aim of reducing the need for residential care. In sum these three factors have contributed to an increasing shift in health and welfare policies and practices in neo-liberal states away from state dependency models of provision in favour of personal and family reliance. Inherent within this shift are assumptions not just about the nature of the family in contemporary society, but also its willingness, and capacity, to assume caring responsibilities. These changes are of particular significance for the long-term care of older people in an ageing society,

While policy and legislation in many neoliberalising countries acknowledges that there is still a role for statutory and independent bodies in supporting older people to ‘age in place’, in reality, where care support in the home is required, most is undertaken by family, friends and neighbours. Such care is largely unpaid and can involve a wide variety of tasks ranging from shopping and the management of financial matters to personal care and medication. Within this book such care is referred to as informal care as distinct from formal care consisting of paid care work undertaken by a range of health and social care professionals drawn from the statutory, voluntary and private sectors. In the UK, as many as one in eight people are now seen to undertake informal (or family) care, looking after someone who is sick, elderly or disabled (Department of Health 2008) – nearly five million of these people care for someone who is over the age of 65 (Maher and Green 2002). Some five years ago, the UK carers’ charity Crossroads estimated that the overall saving to government and taxpayers was around £57 billion per year (BBC News 2003). In the United States, it has been estimated that around one in six households (around 35 million people) provide unpaid care for an adult over the age of 50 – mostly to parents or grandparents (National Alliance for Caregiving 2006). Increasing numbers of caring households are also evident in such countries as Australia, Canada and New Zealand. Clearly, then, informal care within the home is a key component of policy around care for older people and, as such, is crucial to its successful implementation.

Few would argue that state provision could ever replace that provided by informal caregivers. Indeed, Hirst (2002) maintained that most community health and social care services would be unable to cope without the contribution of informal carers – a comment echoed by ter Meulen and van der Made (2000 p. 257) who maintained that, ‘Informal care not only supplements professional care, but is a basic conditioning for the functioning of the organised health care system’. Commenting on the extent of informal care-giving in the UK revealed by the 2001 Census, the then Liberal Democrat spokesman for older people, Paul Burstow, went as far as to claim that informal carers are the foundation upon which the whole care system stands, without them, the whole system would face collapse and many voluntary organisations would struggle (BBC News 2003). Supporting informal carers is thus high on the public policy agendas of many advanced capitalist countries.

However, in conjunction with this recognition that informal carers are critical to the success of policies designed to support ‘ageing in place’, there has been a growing acknowledgement that the heavy demands of care-giving can lead to a decline in the physical and mental health of informal carers themselves (O’Reilly et al. 2008). One consequence of this has been that in countries such as the UK, Canada and New Zealand, governments have introduced a raft of strategies, guidance and legislation designed to support informal carers. This not only places them at the centre of future health and social care strategies, but in the UK at least, is seen to indicate that informal carers are to be supported and viewed as partners in the care of their family member. Indeed, the 2001 National Service Framework for Older People explicitly stated this, thus promoting a co-worker model of formal and informal care.

‘Ageing in place’, then, not only elevates the domestic home as the preferred site of care, but it increases the complexity of the relationships between formal and informal care-givers and care-recipients within the home. Care-giving for older people involves a complex pattern of people (formal and informal carers), places (domestic/non-domestic) and times (daily, intermittent, continuous). As such, it involves not just a single, situated narrative, but several, each evolving over time and space. These narratives do not occur in discrete spaces; rather their complex dimensions are manifest through a series of interwoven stories that emerge at different times as a result of differing sets of circumstances. They can stretch across and beyond the domestic home, to include the community, public and private institutional settings. Understanding how older people and their informal carers experience these shifting landscapes of care is important, but as yet, we have little understanding of how these complex stories weave together. Further, the explicitly spatial nature of care-giving is relatively under-researched and while health geographers have begun to engage with these issues, to date, this work has been poorly conceptualised. There’s No Place Like Home: Place and Care in an Ageing Society represents one attempt to redress these gaps by focusing on those relational practices of care-giving to frail older people that extend from the domestic space of the home to the community and institutional care homes. The book, thus, engages with critical concerns about the nature and site of contemporary care and care-giving. Its geographical lens seeks to provide an increased understanding of how the increasingly porous boundaries between formal care-giving and informal care create complex landscapes and organisational spatialities of care.

Unpacking these complex spatialities involves an understanding of the politics of welfare, prevailing ideologies and socio-cultural systems. Such an approach can enhance our understanding of the needs and interests of dependent groups and their care-givers as well as issues surrounding the social and spatial equity of care.

It is against this background of the growing importance of informal care-giving within academic and political discourse, but also more critical concerns about the nature and site of care and care-giving, that this book is located. It focuses firstly, on the spatial manifestation of care at various scales, and how care is woven into the fabric of particular social spaces, identifying some of the processes behind variations in the care-giving experience. In particular, attention is drawn to the need for a greater understanding of how the interplay between local cultural practices, the social politics associated with care provision and wider structural forces impact on care-giving behaviour within and across space. Secondly, the book engages with debates around the meaning of care and how space can be conceptualised within these debates. More specifically, the book focuses on how the intersection of formal and informal care-giving within domestic, community and residential care settings create a particular landscape of care for older people. To what extent, for example, might it be said that increased dependency on formal care services within the home contributes to an institutionalisation of the home for some frail older people (Milligan 2000)? The growing complexities surrounding these landscapes of care are further called into question in considering care transitions from the domestic home to supported accommodation and residential care homes. For while there has been a burgeoning of interest in the changing nature of care and what this means for informal carer givers (particularly within the sociological and social policy literature) this work has centred almost exclusively on community-based settings and is aspatial in its analysis. Limited attention has focused on how informal care-givers experience and cope with immediate and longer-term transitions in the place of care. It is generally assumed, for example, that on entry to residential care, the ‘burden’ of caring transfers from the informal carer/s to professional caring staff within the care home setting. Yet, informal carers can undertake a surprisingly high level of care in care homes, highlighting the porosity of boundaries between formal and informal care. These transitions and how they impact on the lives of informal carers and care-recipients underpin the analysis of care in this volume.

Not only has the spatial nature of care-giving for frail older people received limited attention, but perhaps with the exception of Twigg’s (2000) work on the care in the home, it has also been poorly theorised. As she, herself, noted, while such care touches on some of the most intimate and important aspects of people’s lives, it has been dominated by practical concerns and as such, has tended to become something of an academic backwater. The book, thus aims to conceptualise the spatial experience of care in terms of informal carers’ location and dis-location across the landscape of care. Here, I draw on ideas about anthropological place and non-space postulated by Augé (1995); Serres (1995) notion of extitutional arrangements; and the institutionalisation of the home (Milligan 2000) as a means of interpreting the shifting relationships between people and places in the construction and delivery of care to older people. Running through this book, then, is an engagement with debates around the place of formal and informal care-giving for older people and what this might mean in terms of inclusionary and exclusionary sites of care.

The book draws on debates within the published literature, together a range of case study material and secondary data (largely but not exclusively) from advanced capitalist countries to frame a critical discussion of care-giving for older people across both community and residential care settings. It does so in a way that contributes not only to our appreciation of the importance of place in the care-giving relationship, but also to our understanding of life-course transitions experienced within the care-giving relationship. As articulated through the everyday life experiences of older people and their carers, the book gives attention to the material and non-material manifestations of care within the home, community and residential settings. The aim here is to draw together and extend ideas and understandings emerging from research that I have undertaken with older people and their informal carers – mainly in the UK but also in New Zealand – over the course of the past ten years. Whilst individual studies have had a different overall focus, all have been concerned to explore the relationship between people, place and care. More specifically, they have sought to draw out issues of dependence and independence, need and access to formal and voluntary care services as well as the experience and implications of care for the lives of research participants.

Though much of the focus of this book is on the care of older people within the UK, many of the core themes and concepts discussed are of wider relevance. Hence it is hoped that the book will have resonance for those interested in care and older people across a range of western – particularly neo-liberal – settings. Conceptualising the landscape of care, then, is underpinned by the need to draw out (the complex and evolving) manifestation of care in particular places through a particular social science perspective. In doing so, the book seeks to progress understanding and debate along both these fronts, drawing attention to those largely neglected aspects of informal care for older people and their interrelationship with formal care and places that warrant further examination.

Before outlining the structure of the book, it should be noted that in addition to the definition of informal care-giving discussed on page two, there are three further terms used in this book that perhaps warrant some clarification. Firstly, it is acknowledge that there is substantial debate around what constitutes an older person and whether ‘old age’ should be chronologically defined or linked to some level of physical limitation or disabling condition arising as a result of the ageing process. This is discussed in more detail in Chapter 4. In most western settings old age is linked to pensionable (hence chronological) age – most commonly between 60-65 years. As that is the age around which most statistical data on older people is collated and analysed, this is the definition adopted within this book. When referring to ‘frail elderly’ however, the book is concerned with older people who experience a level of physical limitation or other disabling condition that requires them to seek care or support in undertaking activities of daily life. Secondly, the term supported accommodation is used to refer to (usually) specialist housing options for older people that offer on-site support. This may range from an on-site warden and housing with built in care-call systems and home adaptations, to ‘Extra Care’ with a wider range of support workers and more intensive ‘24/7’ support. Such accommodation may be referred to elsewhere as assisted living, Sheltered Housing or similar. Thirdly, the term care home is also used here to refer to long-term residential settings that provide either, or both, nursing and personal care to frail older people who are no longer able to live independently at home and/or where community-based care support has broken down. This reflects the different terms used in different national settings and the varying stages at which people enter specific types of residential care.

Though each chapter is constructed as a complete entity, the book is designed to provide an ongoing narrative about care and transition and the impact on older people and their informal carers. Chapter 2 situates the volume relative to its broader academic and socio-political context and introduces the notion of ‘the landscape of care’. It suggests that the landscape of care is a multi-faceted concept in at least two distinct senses: a) it refers to the complex embodied and organisational spatialities that emerge from the intersection of formal and informal care-giving in both domestic and institutional environments; b) the landscape of care can be thought of as a body of intellectual work – one that takes as its starting point the emplaced nature of care and care practices. The chapter begins by giving an overview of the growing debate around informal care and care-giving in contemporary western society. It critically reviews how political and ideological shifts in welfare are impacting on the meaning and place of care in the late twentieth/early twenty-first century. This approach sets the scene for debate about the changing nature of the care-giving relationship and its spatial expression. The chapter also critically reviews some of the key theoretical approaches that social scientists have used to explore the shifting topology of care.

Chapter 3 draws on recent case study and statistical data in neo-liberal states to examine who actually undertakes the informal care-giving role and where. In particular, it explores issues of gender, class and ethnicity. These issues are framed within contemporary conceptual and theoretical debates about: proximity and distance the extent to which the changing nature of the family may be impacting on how informal care is conceptualised within co-resident and non-resident frameworks; debates around the gendered nature of care and the extent to which this may be manifest in an institutionalised gender bias in available care support. The chapter also considers the less frequently examined issue of care-giving and socio-economic status. That is, the extent to which people’s willingness and ability to care may be wrapped up with issues of social class and cultural norms. It also briefly addresses issues of culture, ethnicity and care. In sum, the chapter considers the extent to which social and spatial variations in contemporary society affect who cares.

Whilst the book is framed largely around informal care-giving for older people within western democracies, as sugessted above, definitions of what constitutes care and the experience of informal care-giving are highly cultural (Tronto 1993; McDaid and Sassi 2001). The availability of formal and informal care across space and between differing social groups is, thus, subject to varying social and political perceptions of rights and responsibilities in the field of care-giving. Chapter 4 thus serves to give an overview of cultural and international differences in the meaning and practice of informal care-giving. Drawing primarily on secondary data sources, it considers how ageing and informal care-giving is understood and experienced within differing national and international contexts. In doing so, it draws out some of the common, as well as some of the culturally specific factors, that have contributed to shifts in who cares where for older people in differing settings across the globe.

Chapter 5 focuses on care and the home. More specifically it addresses the role of formal and informal carers in supporting frail older people to age in place. Framed by the contemporary legislative and policy context of care for frail older people and informal carers in the UK, it examines how both carers and care-recipients experience care-giving in the home. In doing so, it draws out debate around the home/care dichotomy where the complexity of the home as a site of care, work and personal meaning brings both public and private into tension.

The current and projected growth of those in the older age groups (particularly amongst the oldest old), shifting family structures, the potential ‘care gap’ combined with policies designed to support ‘ageing in place’ raises increasing dilemmas about how this care will be actualised. One response has been a turn to new care technologies as a means of supporting the care needs (or perceived care needs) of frail older people within the home. This ‘technological fix’ raises some important questions about how older people and their care-givers experience these new care technologies and the extent to which they may be reshaping both the place and nature of care. New care technologies, for example, create shifts in care work and responsibilities to care. In Chapter 6, then, I consider how these new technologies may be contributing not only to a reshaping of who undertakes care and the nature of that care they perform, but where that care takes place. To what extent, for example, do new care technologies hold the potential to make the homes of older people ‘better places to live in’ – or do they act to increase social isolation and change the spaces and functions of the home such that the home is no longer a recognisable or desirable places to be?

Care within the domestic home does not exist in a vacuum; hence Chapter 7 is concerned with issues of community, care and support outside the domestic (or familial) home. It considers how informal carers understand and gain access to public, private and voluntary care services and how place can play an important role in mediating the availability and access to these services. Whilst ageing in place is often equated with staying put within the domestic home, we have also seen the emergence of a range of alternative supported housing options. Hence this chapter also addresses issues around the experience of transition to supported housing. Finally, the chapter engages with some of the critical debate around care and community that suggests th...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• List of Figures and Tables
• Preface
• 1 Introduction
• 2 Conceptualising the Complex Landscapes of Care
• 3 Who Cares? People, Place and Gender
• 4 Mapping the Contours of Care – International and Transnational Perspectives
• 5 Care and Home
• 6 The Impact of New Care Technologies on Home and Care
• 7 Care and Community?
• 8 Care and Transition – From Community to Residential Care
• 9 Emotion and the Socio-spatial Mediation of Care
• 10 Reconfiguring the Landscape of Care: Porosity, Integration and Extitution
• 11 Concluding Commentary
• Bibliography
• Index