Introduction

Care homes are a major part of the health care system in the United Kingdom. The majority of the frail older people occupying publicly funded beds in the United Kingdom are in care homes, not in hospitals. The specialty of geriatric medicine started with such patients. In contrast, most geriatric medicine services currently have little or no involvement with care home residents. Indeed, the responsibilities and arrangements for their health care are ill-defined, inconsistent, and, in some places, chaotic. Hence knowledge of what high-quality medicine for care homes residents should consist of, and how it might best be organized, lags behind the progress made for the acute care of older people. But change is afoot: the last decade has seen growing momentum in policy and practice not evident when the corresponding chapter was written for the previous edition of this book. This chapter describes this journey and the clinical and contextual challenges of providing high-quality care, with an account of recent trends in service innovations and clinical interventions. Finally, it ends with recommendations for future progress and research priorities.

A Brief History of Long-Term Care in the United Kingdom

In 1948, the National Health Service (NHS) inherited a disorderly array of chronic sick wards in municipal hospitals, workhouse infirmaries, former infectious disease hospitals, and sanatoria; many of these poorly funded institutions were derived from Poor Law origins. The pioneering work of Marjory Warren in one such institution is credited with the birth of geriatric medicine as a specialty.¹ Essentially it was about addressing decades of neglect. This meant discharging some long-term residents and reducing the influx of new residents through comprehensive clinical and social assessment, improving access to conventional medicine, and developing a rehabilitative approach. This constituted the core of geriatric practice through the 1950s and 1960s. It was facilitated by the gradual emergence of community and domiciliary support from the NHS or local government.

Simultaneously, however, new long-term care facilities were being created. Part III of the National Assistance Act of 1948 ² set out the legal responsibilities of local councils to provide accommodation for frail and financially insecure older people. Over time, the residents were increasingly those with mental and/or physical reasons for losing capacity for independence, but the details of their ongoing clinical and social needs and care did not receive much attention or investment. In 1962 Townsend published The Last Refuge, a study of residential institutions and homes for the aged in England and Wales.³ This study concluded that communal homes were “not adequately meeting the physical, psychological, and social needs of the elderly people living in them, and that alternative services and living arrangements should quickly take their place.”

Diagnosis was not part of the social care offer, although by the 1980s it was clear that the resident profile in dependency terms was becoming similar to the remaining hospitalized older residents in geriatric or old-age psychiatry NHS long-stay wards. The next period saw major policy changes and resulted in transformation of both sectors with a massive expansion of the independent (private, voluntary, not for profit, etc.) sector care home capacity, which became the major provider, albeit mostly enabled by public finance. The number of geriatric beds in the NHS had remained fairly constant from 1959 to 1985, with improved and new treatments, rehabilitation, and community care counterbalancing increasing numbers of older people. But from the mid-1980s, the numbers declined as old, inadequate, often Victorian accommodations were closed, and the geriatric medical services took their place in the expanding district general hospital sector. There was scant room for the long-term care wards, and, increasingly, the NHS and geriatricians looked to the independent sector to offer the alternative. By 1990s, care homes had become a major component of the welfare system’s provision of care for vulnerable and clinically unstable older people, many providing specialized services (e.g., services for older people with dementia).

Current Provision and Future Trends

Between 3% and 4% of the older (older than 65 years) population live in care homes. In the 2011 census,⁴ more than a quarter of a million (291,000) people aged 65 and older were living in care homes in England and Wales, representing 3.2% of the total population of this age group. This is slightly less than the European average. The census data showed a geographic range across local government districts from 1.0% to 6.1% (median 3.1%) of adults older than 65 years and from 3.5 to 22.8% (median 13.7%) of those older than 85 years.⁴ This variation is partly due to new residents migrating to where the care homes exist (e.g., the south coast of England). But it also reflects differential use of NHS and local government resources. For example, across England there was a more than twofold difference in the proportion of adult social care spending allocated to fund care home residence, and this variation appeared unexplained by differences in local demographics, deprivation levels, or indeed the local NHS bedpool, suggesting that genuine and major differences in practice exist.⁵

Current projections for an increase in life expectancy have been predicted to create the need for many more residential care home places, a rise overall by perhaps 150% over the next 50 years.⁶ The percentage of people aged 65 years and older entering care homes is expected to increase 20% by 2028.⁷ The prediction of future need for care home places is difficult. Future levels of dependency will depend on the changing nature and prevalence of multiple morbidities, the increasing prevalence of dementia, and the growing importance of frailty in the very old. The availability of informal caregivers, the paid caregiver workforce, and preferences among older people add to the complexity. A detailed assessment of factors affecting projections was provided by a Royal Commission in 1999.⁸

Recent trends illustrate that the picture is indeed complex and changing. According to the most recent census data (2011), the number of residents has remained almost stable since 2001, increasing by just 0.3%, whereas the older population grew by 11% over that decade. Women have always outstripped men, but the trend during this period was for slightly fewer women and 15.2% more men, although the ratio remains at around 2.8 women for each man. The resident care home population is aging: in 2011, people aged 85 and older represented 59.2% of the older care home population compared to 56.5% in 2001. Although residents of care homes with nursing services have higher levels of morbidity and disability, surveys have shown that there is considerable overlap. There is likely to be an increasing need for specialist dementia skills and specialized care home places.

An additional challenge is the increasing diversity of the older population in terms of ethnicity, religion, and culture. This affects catering and communication between caregivers and residents, but more fundamentally it will bring a range of complexities to health care and technologic approaches, from eating and drinking to death and dying. A resident-centered approach to care is required, keeping up with the population as it becomes more diverse and anticipating requirements for interpretation, advocacy, and other appropriate resources.

Regulation, Funding, and Standards

Each nation of the United Kingdom has a regulatory body, overseeing a statutory requirement for providers to register and then comply with certain standards. In England, a care home has been defined as social care residential accommodation where people live, but do not own or rent, and are in need of nursing services, personal care, or both.⁹ Within that broad definition, registration can identify specific services providing care for people with learning disabilities, people with mental health conditions, adults older than 65 years. In all cases, the registration (and associated regulations and standards) must specify whether or not the care includes nursing. Other nations of the United Kingdom use these terms with slight differences: Northern Ireland continues to use the terms nursing homes and residential homes¹⁰; in Scotland and Wales the general term care home is used to include those with or without nursing care.^11,12

There is a mixed economy of provision. In England, for example, ownership of care homes in 2010 was described as 73% independent, 14% voluntary sector, 11% local council, 1% NHS, and 1% “other.”⁷ Care homes vary enormously in size from small, family-run “residential homes” to major chains with tens of thousands of beds. In 2012 in England across all ownership sectors, the average size was 18.5 places for residential care homes and 46.6 places for nursing homes.¹³

Successive laws and regulations have refined the funding arrangements and entitlements of individuals for financial support. The underlying legal framework has been the 1948 historic separation of obligations of the NHS, free at the point of use, and those of local government, means tested with some details locally determined. Changes in patterns of provision resulted in significant geographic variation and major anomalies in access and funding, sometimes resulting in legal challenges to clarify interpretations of law.

The current arrangements in all four U.K. nations require a rigorous assessment of individual care needs as a condition of accessing public funding. Those deemed to have needs resembling those for which hospital-type care would have been the traditional option are entitled to “NHS continuing health care” funded by the local NHS body with no personal contribution. This is a small proportion of current residents. For the remainder, the bulk of the costs are treated as personal “social care” resources and therefore means tested according to criteria of wealth laid out by government in ongoing regulations. The component of care deemed to be nursing must, by law, be funded by the NHS and is paid at the same rate across England: for 2013/14, the standard rate was £109.79 a week. The provision of nursing care can affect the individual resident’s entitlement to NHS services usually available when living at home, such as general district nursing.

The exception to these funding arrangements is in Scotland, where personal care is also publically funded for residents needing 24/7 nursing. Throughout the United Kingdom, older individuals may opt to fund their own care in total, obviating the need for any statutory assessment. This accounts for perhaps a quarter of residents in some regions. In 2012, the total value of the care home market in England was estimated at £22 billion,¹⁴ 73% of which was state funding, the rest being self-funded. The sustainability of this public funding continues to occupy the attention of politicians and policy makers with a succession of inquiries and official reports, while the professions have been more concerned with issues of care and quality.

The Care Quality Commission (CQC) in England combines the regulatory and inspection functions and provides publically available grading of care homes on its website.⁹ Until 2014 the CQC inspections produced ratings (inadequate, requires improvement, good, or outstanding) with respect to five domains: respect and dignity; care and welfare; suitability of staffing; safeguarding and safety; and monitoring quality. These judgments are now made in response to the following considerations: Are they safe? Are they effective? Are they caring? Are they responsive? Are they well-led? In Wales and Northern Ireland, these functions are also combined, whereas in Scotland, National Care Standards exist that provide the basis for the work of the Care Inspectorate as an independent scrutiny and improvement body for care services.

Trends in Quality and the Specter of Elder Abuse

On quality indicators, the standards of care provided appear to have improved consistently over the past decade. For example, since 2003 in England, more care homes each year have met National Minimum Standards up to 93% by 2011 and the proportion achieving safe working practices doubled to 80%. ¹⁵ The percentage of older people living in care homes rated “good” or “excellent” rose from 75% to 86%. For care, compliance rates rose each year to 2014, but the trends were mixed for the other domains.¹⁶ Certainly, some poor standards of care persist and examples continue to attract media attention, focusing on personal care and dignity.

At its extreme, poor care amounts to elder abuse, whether it is caused by ignorance, inadequate staffing, or willful harm. The incidence of abuse is difficult to establish. The most definitive study, Prevention of Abuse and Neglect in the Institutional Care of Older Adults (PANICOA),¹⁷ was reported in 2013. It comprised a linked set of eight primary research studies and three secondary analyses and included more than 2600 hours of observation and approximately 500 interviews in 43 care homes (and 32 acute hospitals), predominantly across England and Wales. This study provided valuable insight into the context, nature, and frequency of different types of abuse likely to be broadly indicative of the situation in care homes generally.

The results of the PANICOA study showed that the risk of physical assault to residents from care staff was low, but residents were potentially at risk of assault from others’ challenging behavior if this was not managed effectively by care staff. Overall, the weakest areas related to the maintenance of dignity and privacy in personal care (e.g., in using the toilet), although care homes were slightly better in this regard than hospital wards. Supporting social engagement and facilitating a sense of meaning and purpose in residents’ lives were other important weaknesses. PANICOA identified key attributes affecting the experiences of residents around leadership, staff training and support, the care culture, and the relationship between care homes and their surrounding health and social care communities.

The PANICOA report made 100 recommendations for several audiences. Key recommendations are highlighted in Box 124-1.

Taking a more positive perspective, care homes have the potential to improve people’s lives socially, physically, and psychologically, more so if relationship-centered approaches to care are employed, allied to understanding the resident’s attitude toward living in care homes.¹⁸

This approach is exemplified by the My Home Life project (http://myhomelifemovement.org/), which has worked with care homes to support them in improving daily care and the experience of both staff and residents. These developments have demonstrated the appetite in care homes to gain recognition as an integral and specialist resource for the future health and social care of older people.