Introduction

This chapter considers the scale of unpaid care, who are its givers and receivers, and how it meshes together with formal (paid-for) care. It examines the scale of formal care relative to informal (unpaid) care, ways of measuring the amount of unpaid care and the number of people involved. Unmet need for care is assessed from the English Longitudinal Study of Ageing (ELSA) and the HSE.

Evidence from the growth of the care workforce and from the HSE demonstrates an expansion of self-funded purchases of care services in recent years. But this has failed to fill the gaps left by shrinking council services; unmet need remains high. The volume of unpaid care is only being sustained because more people are caring for very long hours, leading to acute carer stress. Lastly, the chapter examines how the amounts of formal and informal care received vary by whether someone has a partner or children to help; and long-term trends in how informal eldercare is distributed between relatives and non-kin.

The definition of ‘care’, and what tasks and facilities should be included in any definition of the need for support, is a crucial one. Some issues about this have arisen in implementing the free personal care policy established from 2002 in Scotland.

The themes and purpose of this book

The central theme of this book is how to deal with the mushrooming demand for social care in Britain's ageing society. It addresses some issues about budgeting for a national care service, especially the challenges of reducing or lifting user charges while paying care workers adequately. It considers the potential shortage of unpaid care, and how community solidarity can help fill some important gaps in the care system.

The first part (Chapters 2 and 3) describes the care shortage and how it is likely to worsen in coming years. It emphasises the dependence of adult care on unpaid support from family and friends. This is so large that state services can never replace it all, so we have to find a way to provide enough of it for the growing share of the population who are very old and/or disabled. Care budgets have not kept pace with the rising number of very old people in poor health, nor the even more rapid increase in disabled younger adults. Some evidence of the effects in terms of service reduction is summarised later in this chapter. The shortage of local authority funds since the financial crisis of 2008/9 has induced rationing of council-arranged care to those in greatest need, with a rising proportion of clients paying for all or part of their care package. Many have started buying care privately, outwith council arrangements.

Introduction

This chapter describes the types of community project that might help to address the care deficit of coming years. It focuses on mutual aid, assessing its capacity to grow a culture of mutual support between neighbours, and to help build collective projects for supporting family carers and the growth of non-profit social enterprises. Mutual aid is broadly defined here; the examples described include the mutual aid groups (MAGs) of the COVID-19 pandemic period, timebanks and community unions. An example of traditional volunteering, the NHS Volunteer Responder scheme, is introduced by way of contrast, to show both its potential and its limitations.

MAGs and timebanks could support the growth of social enterprises, including micro-enterprises and care cooperatives, of the kind mentioned in Chapter 4. They can help to run collective services like day centres and lunch clubs. Like traditional volunteering, projects based on mutual aid principles have potential for augmenting the supply of informal care for individuals, but these principles are somewhat different from the traditional volunteering model and carry several advantages, as this chapter will describe. Timebanks may be considered a form of mutual aid, insofar as they offer exchanges of support between individuals. While this has been more prominent in their history in the United States, China and Japan, timebanks’ main function in the UK has been to provide a volunteering opportunity which helps people build supportive personal friendship networks, alleviating isolation, and offering sociable exercise and a sense of purpose.

This chapter considers the costs of long-term care for service users and their families, and the policies that are necessary for adequate financial protection. The main focus is on home care services due to the substantial gap in evidence regarding their affordability. Given the widespread preference for home-based care, particularly in Europe where the majority of long-term care users reside at home, understanding the financial implications of these services is crucial. While decisions about home care primarily prioritize users’ wellbeing, financial considerations also shape care arrangements. Overall, common protective mechanisms such as caps on out-of-pocket payments income-based and means tests seem unable to successfully protect long-term care users from experiencing catastrophic spending.

Population ageing coupled with a growing burden of disease and disability will cause long-term care needs to increase considerably around the world. Yet despite changing demographics, many countries do not invest adequately in long-term care systems. This chapter sets out the reasons that long-term care is often underprioritized by governments and begins to consider why countries need a re-think when it comes to the way they care for older adults.

This chapter explores how common challenges facing long-term care systems across the world have given rise to common trends in the development of long-term care service delivery - a focus on improving integration, the shift from residential care to home- and community-based care, the growing role of the private sector in care provision and the emergence of digital technologies with transformative potential. Recent developments in five countries (Germany, Japan, Sweden, Norway, and Romania) are used to exemplify and distil overarching lessons for strengthening long-term care service delivery.

This chapter examines the potential economic impact of investing in long-term care systems. Long-term care systems often indirectly burden informal caregivers, primarily women, leading to a significant loss of potential income and economic growth opportunities. Without adequately compensated, trained care professionals, it’s challenging for unpaid informal caregivers to increase their labour market participation. A comprehensive long-term care system must include support programs and policy changes that encourage both informal and formal caregivers to participate fully in the workforce, which is vital for economic growth and productivity.

This chapter reviews the strategies countries are employing to improve the quality of long-term care for older adults and assesses the impact of these approaches. Given that long-term care is a relatively new component of welfare systems, there is limited evidence on effective quality improvement measures. The scarcity of data on care quality in most countries further complicates the evaluation and comparison of these strategies. Despite these challenges, the chapter provides an overview of various quality improvement approaches, utilizing available evidence to understand their effects on the quality of long-term care.

This chapter examines the challenges in measuring long-term care needs to determine eligibility and the impact of eligibility rules on access to care and wellbeing, focusing on European countries with established long-term care systems. Eligibility rules are crucial for identifying individuals with the greatest need and ensuring equitable resource distribution, yet defining these rules is challenging due to the lack of a universal approach to measuring health and social needs. Consequently, some individuals with functional or cognitive limitations may be inadequately supported or face high out-of-pocket costs, leading to reliance on informal care or unmet needs. This can reduce their independence and increase the risk of costly hospitalizations. The chapter advocates for expanding eligibility rules to improve coverage, equity, and efficiency, highlighting their role in increasing access to care, reducing poverty due to care costs, and enhancing wellbeing.

This chapter concludes by summarizing the evidence presented in the book and considering the way forward by re-visiting the arguments in favour of investing in long-term care and the costs of inaction.