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Long-Term Care

LONG-TERM CARE

Long-term care (LTC) includes the full range of health, personal care, and social services provided at home and in the community for a continuing period to adults who lack or have lost the capacity to care fully for themselves and remain independent (Dearborn Financial Publishing 1997). A narrower but fairly common view is that LTC encompasses principally residential and institutional accommodation for older persons with special care needs. However, "long-term care" is a broad term, variously defined and interpreted in different countries and even within individual health and social care systems. As distinct from acute care, LTC is not primarily curative but aims to maintain people either in the community or in residential (institutional) settings of various sorts.

Much discussion of LTC has focused, for demographic reasons, on care for elderly people. They are the main user groups in LTC, although long-term care users also include adults with special needs because of physical disability and mental illness or handicap. There are policy, finance, and practice issues inevitably raised by the mixed clientele of LTC (Binstock et al. 1996). A popular image is that LTC comprises mainly formal facilities and qualified personnel or trained volunteers delivering services in institutions and the community. However, probably the most common form of LTC worldwide and especially in developing countries is that provided by informal caregivers, particularly the families of those needing care. This can be a source of both pride and frustration for many families. There is increasing recognition of the burden and strain on informal family caregivers. In many cultures, the tradition of family care is ensconced in the notion of filial piety. While this is a particularly Chinese and East Asian concept of (reciprocal) duty of care between parents and their children, the realities of family responsibility and interactions in care are readily recognizable in all cultures.

The numbers and proportions of people, elderly persons in particular, living in formal LTC institutions vary considerably from one country to another. The size of the population group in question is not generally a very good indicator of the need for LTC, or its likely provision, in any given country. More important are the evolution and philosophy of health and welfare of provision. Epidemiologically and demographically, the gender balance in any given population is also important, as patterns of disability and service use tend to differ considerably between males and females. However, data on LTC are notoriously difficult to compare internationally. There are considerable differences in both definition and provision of the various types of residential facilities, nursing homes, and hostels, as well as of duration of stay. In Europe, for example, the percentages of people aged 65 and over living in an institution in the early 1990s ranged from 1.8 percent in Greece, 2.4 percent in Spain, 5.1 percent in France and the United Kingdom, and 5.4 percent in Denmark and Germany to 9.1 percent in the Netherlands. The percentages of those living with their children showed an even greater range, from 7 percent in Denmark, and 18 percent in Britain and France to 35 percent in Greece and 48 percent in Spain. In the United States, on any one day, it has been estimated that 5 percent of the older population lives in a nursing home. However, between 25 percent and 43 percent of 65-year-olds (depending on estimates) can expect to use a nursing home at some time in their lives. Indeed, the older the person, the greater the chance of living in a nursing home. A person aged 85 or over in the United States in 1985 had almost a twenty times greater chance than someone aged 65–74 of living in a nursing home (Novak 1997).


ASSESSING NEED FOR LTC

An individual adult's need for LTC typically arises when physical or cognitive abilities impair the ability at any age to perform basic activities of daily living (ADL) such as bathing, dressing and toileting and, increasingly, the ability to conduct instrumental ADL such as shopping and house cleaning. To help assess need for and provision of LTC, various forms of ADL scales have been developed. Two of the best known are by Katz et al. (1963) and Mahoney and Barthel (1965). Other important instruments include the Functional Independence Measure (FIM); the principal component of the Uniform Data Set (UDS); and the Minimum Data Set (MDS), a component of the Residential Assessment Instrument (RAI). The nursing home RAI includes a set of core assessment items (the MDS) for assessment and care screening for nursing home residents on, say, admission and periodically thereafter. This enables the identification of any significant change in status and the development of individualized restorative plans of care and it has been successfully applied in the United States and many other countries, for a range of specific purposes in LTC. Another relevant scale is the SF-36 for health-related quality of life, although it is not primarily designed for use in LTC settings.

Aggregate need for LTC is influenced by a wide range of factors. Aging of populations is an important factor, but the health status of populations is perhaps even more important. Expectation of life at birth is increasing almost everywhere, and, more important, expectation of life at age 60 and over is also increasing. The significance for LTC can be in at least two directions, depending on whether the expansion of morbidity or compression of morbidity hypotheses hold true. The "expansion" hypothesis suggests that further reductions in old-age mortality will expose the remaining population to a longer duration in which the nonfatal diseases of senescence are likely to emerge. The disabled portion of elderly life span will increase faster than the healthy and active portion. If this hypothesis holds true, with growing proportions of the "older-old" in the populations of most countries, there will be a steadily growing demand for community and institutional LTC provision. (See Table 1.)

Alternatively, the compression of morbidity hypothesis holds that mortality and morbidity will be simultaneously compressed and that lifestyle changes will reduce the risk of death from fatal and nonfatal diseases of senescence. A compression of morbidity is likely to have crucial implications for LTC need and provision, but precise details are difficult to assess. It implies that fewer people will need to live for long periods in institutions; conversely, there will probably be an increased need for social and community LTC for increasingly elderly population. Many of these people will be single and may not be very well provided for financially. This is especially true for single (usually widowed) elderly women, among whom many aspects of poverty are concentrated in many societies. They may disproportionately require low-cost or publicly funded communitybased LTC. However, while there is some evidence, it is still early to state categorically that compression of morbidity will occur uniformly or continuously. Rather, there is increasing evidence of health variations both within and between populations and subgroups.


SERVICES AND PROVIDERS IN LTC

Nursing and Residential Homes. These are the institutions many people associate with long-term care. Definitions of nursing homes vary internationally, but, we will consider a home to be in this category (rather than as a retirement home, as old people's home, a board-and-care home, or the like) if it provides a specified amount of actual nursing and personal care and attention. Internationally, a nursing home has been defined as "an

Table 1
Factors That May Affect the Demand for Long-Term Care
source: peace et al. (1997, p. 23)
demographic: increase in the number of very old people; increased morbidity with increasing age; in particular, increase in numbers of older people suffering from dementing illnesses.
social: changes in the pattern of family structures and responsibilities at work and at home; increased tendency for some families to live at a distance from each other.
economic and consumer: improved financial position of many older people; older people making a positive choice about long-term care.
service: increased pressure on long-stay hospital beds; more effective use of acute hospital beds; closure of psychiatric hospitals.
political: initial stimulation through public funding of private and voluntary provision via supplementary benefit; community care legislation; attack on residential provision. transfer of state funding to cash-limited local authority budgets since april 1993.
ideological: increasing popular support for a pluralist approach to welfare during the 1980s. increasing reliance during the late 1980s and the 1990s on the market within health and social welfare services.

institution providing nursing care 24 hours a day, assistance with ADL and mobility, psychosocial and personal care, paramedical care, such as physiotherapy and occupational therapy, as well as room and board" (Ribbe et al. 1997, p. 4). In general, nursing homes provide the highest level of nursing cum medical care outside acute hospitals. In many countries, especially in the developed world, they are licensed and inspected and subject to a variety of rules and standards. Some nursing homes have a medical or nursing teaching affiliation. Although the majority of long-term care is home-based and provided by informal caregivers (see below), nursing homes still epitomize the popular view of LTC, especially among those responsible for financing and legislating in this area. Indeed, this view of institutional care as the dominant form of LTC is rather difficult to change and represents a challenge to social scientists.

International Variations in Nursing Home Provision The proportions of people living in nursing homes and the per capita provision manifestly vary internationally, compounded by differences in definitions of nursing and residential homes. (See Table 2.) However, relative preponderance can be illustrated from a multicountry study of provision and structure of LTC systems. The countries studied are developed nations with high life expectancies; they include Sweden (with the oldest population in the study), Iceland (with the youngest), and Japan (forecast to have the highest aging rates in the coming three decades). Between 2 and 5 percent of elderly people were found to live in nursing homes, with variable percentages in residential homes (although the definitions also varied). Iceland, with the youngest age structure, actually showed the highest rates of institutionalization and nursing home residence, while Sweden, with the oldest, had a relatively lower percentage. This study found little correlation between the aging status of a country and the number of nursing home beds. Institutionalization rates differ as much according to population age structure and need as to differences in organization and financing of LTC services, the responsibility assumed for the care of elderly people by various sectors and the availability of LTC beds. Cultural factors and traditions of family care also influence strongly these levels of provision and uptake in any given country.

Residential Homes. Residential homes offer lower levels of care compared with nursing homes and they, rather than nursing homes per se, often provide the bulk of serviced accommodation for elderly people and adults with moderate disabilities. The terminology, scale, standards, registration, and licensing of "residential homes" vary considerably internationally. This category can include old people's homes, old-age homes, homes for the elderly, residential homes, board-and-care homes, boarding homes, and elderly hostels, among others. Many are small-scale, board-and-lodging establishments with few residents, no specialist staff, and very few facilities. Others are specialized

Table 2
Percentage of People Over 65 Years of Age Living at Home and in Institutions (prevalence data; different years in the early 1990s)
country
place of residenceu.s.japanicelandaswedendenmarknetherlandsu.k.franceitaly
note: aincluding only elderly of ≥67 years.
bincluding only residential care homes and not group facilities such as board and care homes.
cincluding some sheltered housing and other special dwellings for elderly.
dincluding some young disabled.
eno facilities described as nursing homes; 2 percent of elderly reside in nursing-home-like facilities.
source: ribbe et al. (1997, p.6)
own home, independently or with informal and/or formal care (including domestic help and home nursing)94.087.094.085.090.093.094.096.0
residential homes, home for the aged,old people's homes(low levels of care)1.5b0.55.03.010.5c6.53.5d4.01.0
nursing homes (high levels of care)5.01.58.02.04.02.52.0–e <2.0
hospitals (intensive medical care)4.0<1.0<1.0<1.01.51.0

and provide high-standard, often high-cost, residential care with full meal service, facilities, grounds, and services. In some systems, most are licensed and inspected (above a certain size); in other systems, regulations are far more relaxed.

Admission to a residential setting often stems from an inability to manage at home because of difficulties with activities of daily living (ADL). In some residential homes, assistance is given with basic activities of daily living. In others, admission may be for social reasons of company or a lack of wish to maintain a home. However, while most residents will be basically ambulatory, in many aging nations there is a growing overlap among residents in residential homes and those in nursing homes. Indeed, increasing age and deteriorating health status can alter the case mix of some residential homes so that they sometimes resemble nursing homes but lack specialized facilities and staff. This can present a serious problem to the delivery of appropriate and quality care.

Sheltered Housing. Sheltered housing is generally purpose-built accommodation in which residents live in their own unit, with their own front door, but in a group development, with a system of linkages or alarms and served (usually full time) by a supervisor or warden. A range of services such as cleaning, shopping and entertainment, and common facilities may be provided on site, but these vary a great deal among sheltered housing schemes. Some schemes are small scale and involve only a handful of houses and residents. At the extreme, retirement villages established for older adults, increasingly common in North America and Australia, may be regarded as a type of sheltered housing. In many countries, various types of congregate housing are central to LTC.

Sheltered housing may be publicly provided, but it can be individually owned and provide a means for elderly people to remain in owneroccupancy. Increasingly, in countries such as the United Kingdom, a distinction is emerging between "ordinary" sheltered housing and "very sheltered" accommodation. In sheltered accommodation, residents generally require little more than suitable housing with the moral support of an alarm system to call emergency assistance. Very sheltered accommodation provides a greater intensity of services more akin to those in residential care settings. Many people feel that sheltered or very sheltered housing is an ideal form of accommodation for LTC delivery, and it certainly does have many positive aspects when the designs are appropriate and residents able largely to live independently. However, the question of what happens when tenants become older and more frail is difficult, as are the potential for ghettoization of elderly people (Tinker 1992, 1997). In a high-density accommodation society such as Hong Kong, sheltered housing has been adapted to accommodate unrelated single elderly people for whom the provision of totally independent homes has proved difficult. Since the late 1980s, under the Housing for Senior Citizens scheme, public housing apartments have been provided. Usually three elderly people share an apartment. Each has an individual bedroom, and they share a communal living room and kitchen. Alarm systems and a warden provide continuity of contact, and certain communal activities are arranged for residents.

Care for Younger Adults: Psychiatric and Group Homes. Younger adults are often in need of LTC because of physical or mental incapacity. Sometimes, specialist care and accommodation is required because of, for example, spinal cord injuries. Younger LTC residents often also have different needs and perspectives from older recipients: a goal might be to find ways to assist younger people get out and about, commute to work, enjoy a full range of activities, and be contributing members of society. Home- and community-based services are as important for the younger as for the older persons in need of LTC (Binstock et al. 1996). However, some younger adults, for example, with severe mental or physical problems, might remain in LTC psychiatric accommodation or community-based group homes or hostels for a very long period of time, while receiving various forms of adult day care or respite care (see below).

Home and Community Care. Community and home-based services have the main aim of enabling people to continue living in their own homes or in the community for as long as possible. They involve a wide range of types of services and facilities provided by the formal and informal sectors. Home health care programs deliver health care and related services to people's homes; they have been called "hospitals without walls." Again, as in LTC generally, definitions of "home care" vary among countries. A recent study of fifteen countries in Europe found considerable variation and defined home care as care provided at home by professional home nursing organizations and home help services. Other professionals—such as general practitioners (family doctors), occupational therapists, and physiotherapists—were excluded, although it is recognized that they do have a clear function in delivering care and often enable people to continue living at home (Hutten and Kerkstra 1996). Home nursing services include rehabilitative, promotive, preventive, and technical nursing care, with an emphasis mainly on the nursing of sick people at home. Home help services can provide a wide range of care, including shopping, cooking, cleaning, and laundering. They sometimes help with dressing and washing, and they often help care recipients to do administrative paperwork, pay bills, collect pensions, and the like. Many studies show that a home helper is also valued for providing company and someone to talk to. Clients are generally elderly (for example, in Britain, almost 90 percent). In some countries, the growing frailty of clients has led to the development of more intensive home care schemes that provide personal care in addition to doing simple cleaning and other tasks.

Several factors have raised the importance of home-based care: increasing demand from aging populations; policies of substitution of home care for institutional care (hospital care for the sick and residential care for elderly people) because of health care costs; and the changing nature of home care itself, with its increasing ability to deliver innovative services at home. However, while home is becoming the venue for delivery of care for many people of all ages, it is not necessarily a cheaper option than institutional care, especially for those requiring twenty-four-hour care. In addition, its future is not necessarily troublefree. The increasing numbers of older-old mean that complex home and family settings may evolve. For example, there will be increasing numbers of adult children in their sixties caring for parents in their eighties or nineties; likewise, there is an increasing number of elderly parents caring for adult disabled children at home. This is likely to require a very complex mix of support services to be delivered in the community and to people's homes.

Community-Based Care Facilities. These are also very varied and can provide care or more informal meeting, contact, and social support. Adult day care, variously titled, is a communitybased provision that provides health, social, and related support services in a protective setting but for less than 24 hours on a daily or less frequent basis. Such facilities are becoming increasingly important in the spectrum of LTC services. Adult day care may follow the medical model or the social model or some combination of both. Day care is sometimes provided in a clinic or hospital, where it may have a specific clinical or rehabilitation aim; it may also be provided in a residential home, a day center, or a club. Purpose-built and converted day centers or clubs often provide social contact, recreation, and education. Some offer meal service, and they may act as a base for home delivery of services such as meals on wheels. Many adult day care centers provide transportation, and some have medically trained staff members. Day care is often helpful in relieving relatives from the care of an elderly person or a disabled adult for a few hours a day; recent innovative services provide care in the evenings or at night. An extension of this is respite services (see below) which may be based in the community or in an institution.

Family and Informal Caregivers. The majority of informal caregivers are family members, of closer or more distant relationship, but some are friends and neighbors. While increasing attention is paid to the professionalization of communitybased LTC in most developed-world countries, informal caregivers undoubtedly provide the major portion of care at all levels of need at home. Ironically, ideological shifts from hospital to community in the process of deinstitutionalization have, as a by-product, increased the importance of informal and family caregivers, but often in the absence of full-fledged community care systems. In some societies, especially in the developing world, the family is popularly and sometimes officially regarded as the main and only source of long-term care. Considerable shame and disapprobation can descend on the family that neglects the care of its elderly members, in more traditional societies. Indeed, even in highly developed societies, there is often popular pressure or at least an assumed expectation that the family will take responsibility for LTC of its immediate members, even if this is provided with paid assistants. This can hold true even when the individual is resident in formal LTC settings and family members have visiting or care-providing roles.

Informal caregivers in LTC are predominantly female. American studies show that family caregivers are wives (23 percent), daughters (29 percent), other females (20 percent), husbands (13 percent), sons (8 percent), and other males (7 percent). This pattern holds true in many cultures. In China, for example, it provides an underpinning for the strong belief in the importance of having a son: Once a daughter marries, she traditionally lives with her husband and his parents, thus depriving her own parents of her potential future LTC help and domestic or financial assistance. Research in the United Kingdom and elsewhere indicates that family care is central to the lives of a substantial proportion of older people. In many countries, however, social change—including smaller families; women increasingly in the workforce; greater longevity; and social factors such as divorce, remarriage, and migration—all render the caring potential of the family more difficult. In developing countries, there is often very strong rural-to-urban migration of young working-age people. This can often render rural elders bereft of children who would provide day-to-day help, especially in the absence of formal LTC provision.

The reciprocal nature of family care is increasingly recognized—care flowing from parents to children, grandparents to grandchildren, and in reverse. This is often intricately bound up with exchange relationships, duties, and inheritance patterns. Elderly people themselves also have key roles as caregivers and, as noted above, among retired couples, the principal LTC provider is generally a spouse, often as old as or older than the recipient. Elderly parents often shoulder great responsibility for the LTC of their adult children with developmental disabilities. Indeed, the aging of children with mental retardation and severe physical disabilities has become an acknowledged research and policy issue only over the last two decades, with the shift from an emphasis on early childhood concerns to those of life-span issues. The progressive aging of almost all societies has increased the average age of caregivers of both elderly people and disabled adults. This necessitates important shifts in policy toward, for example, rendering housing more amenable and providing aging generations with greater frequency and variety of support, including respite care (see below).

In spite also of the strong emotional preference for being cared for by family members, many older people and their families, as well as the families of disabled younger adults, increasingly favor the support of professional caregivers when there are extensive care needs. This can be a recognition of caregiver burden—the stresses placed on family members by their caring responsibilities—but it is also a practical recognition of the limitations of families and informal caregivers. Researchers are increasingly focusing on the problems of family caregivers, especially those coping with physical and mental illness and especially those associated with disorders such as dementia. The impacts of providing LTC on family life, privacy, and on other members of the family besides the primary caregiver are also increasingly being recognized.

Respite Care. Respite care is temporary, short-duration, usually residential care with supervision and/or nursing provided for dependent adults, who typically cannot be left alone to live. The purpose is to provide caregivers (usually family members but often formal live-in caregivers) with temporary relief or respite from their caring roles. This clearly recognizes the family context within which much LTC is provided and acknowledges the burden that can be placed on caregivers. It is also a pragmatic recognition that, given appropriate breaks and holidays, family members may be able to continue to provide LTC support that would otherwise not be possible.

Respite care has the explicit aim of relieving the primary caregivers of impaired elderly persons, and its use has been extended to other caregivers of handicapped nonelderly adults. Many caregivers report that the main service they would like is to be given "a break" from caring duties and the chance for a holiday or participation in social activities. While this is undoubtedly the case, evidence is not conclusive that these services significantly reduce caregiver stress. In addition, a range of other services, such as meals on wheels, transport services, befrienders, and home help services might provide some of the functions of short-term respite care, yet they are not classed as such and are not really in this category. The major problem with respite care is that it is only as a rule available on a local basis; it has not generally received high funding priority, and caregivers therefore often feel they cannot rely on it to be available if and when they require it. In addition, there is evidence that, for various reasons, respite care places are often not fully occupied, a feature which renders the service vulnerable when budget reviews are undertaken.

FUNDING OF LTC


Sources of financial support for and cost of LTC vary considerably internationally and are likely to become even more variable as many countries undertake health sector reform and reassess public expenditure on welfare. Classically, LTC falls between health and social care; by its very nature, it lies at the interface between the two. Many public or insurance schemes have been able or willing to pay only for eligible clients who are in the residential or nursing home medical end of the LTC spectrum. By contrast, community-based LTC services for individuals and client groups have emerged piecemeal and have often been excluded from private insurance or public welfare payments. They can be very much a patchwork, dependent on local historical provision and the evolution of national programs. Care by the family, neighbors, and volunteers have also been of extreme importance for LTC recipients in the community, so individual resources and funding remain critical in many systems. At least five public policy options (other than total private reliance) exist for funding LTC. These include means-tested public funding; private insurance; public-private partnerships; social insurance; and funding from general taxation. Increasingly, there is an international focus not purely on value for money or efficiency and quality of LTC (as these are notoriously difficult to define) but on the concept of "best value."

Funding of LTC is fraught with emotion among the public and politicians in many countries, and the moral panic (excess concern about future numbers of elderly people, in particular, and escalation of costs) has frequently made rational debate difficult. The issue is of major concern in the United States, where policies and, by implication, funding, are under considerable debate (O'Brien and Flannery 1997). Welfare states such as the United Kingdom have in the past been based on a combination of free National Health Service provision for health care aspects and social welfare payments for the social care aspects. Increasingly until the early 1990s, there was assistance from local authorities and from generous publicly underpinned funding of private sector homes for elderly people. Private LTC homes flourished during the 1980s. Much of this has changed in the mid-1990s since an extensive review of the nature and funding mechanisms of community care and the retrenchment of more or less automatic public sector support for residents of private old people's homes. A new approach to privatization has resulted in more stringent assessment of residents in private homes who are to receive public support to target the most needy with care packages. Many private old people's homes have subsequently gained vacancies following this policy shift (Bartlett and Phillips 1996).

Comparative analysis of international systems of LTC can be valuable. A study of the evolution of the United Kingdom's LTC policies and those of Israel, which are based on a system of national insurance, attempts to draw some lessons for the United States (Cox 1997). Israel's 1988 Community Long Term Care Insurance Law sought to ensure that all of the state organizations involved in LTC of elderly people would be integrated into one system. Israel attempted to calculate of costs of alternatives to institutionalization. It was estimated that some 60 percent of disabled elderly people on waiting lists for institutional care could, through a basket of services, home care, day care, and personal care to relieve the burden on families, be cared for in their homes at substantially lower costs than those of the institutions. This is a thorny issue, rarely adequately addressed. Modeling exercises have suggested that, in the case of the United States, for example, efficient allocation of home care services can produce some net LTC cost savings. Greene et al. (1998) estimated that reducing nursing home use and using an optimal allocation of home care services could achieve savings of around 10 percent in the overall LTC costs for an identified frail elderly population. However, this involved targeting and a more medically oriented mix of services than has been implemented to date. It appears that the expansion of personal care services may not be significantly justified in terms of cost containment or potential to reduce nursing home use.

Some countries have addressed the philosophy and financing of LTC systematically. The United Kingdom appointed a Royal Commission to review the long and short-term options for a sustainable system of funding LTC for older persons, both in their homes and other settings (Royal Commission on LTC 1999). They recommended coverage by "risk pooling," rather than private insurance, and services underwritten by general taxation. The report of the Commission provides useful sources of costs and means of delivery. Japan, for example, likely in the next two decades to become proportionately the most elderly country in the world, demonstrates the social, economic, and political importance of LTC. Japan has experienced increased lengthening and seriousness of LTC, with one out of every two bedridden persons being bedridden for two years or more. More than half the care attendants are themselves aged 60 or older. The percentage of elderly people living with their children has fallen to just over one-half, and the proportion of women working is increasing. The Japanese Ministry of Health and Welfare estimates that the percentage of people aged 65 and over who need care will rise from 11.8 percent in 1993 to 14 percent in 2010 and even 16 percent in 2025.

As a result of these pressures, in December 1997, legislation was passed for a new public LTC insurance scheme—Kaigo Hoken—to be fully operational from 2000. This makes Japan only the third country, after Holland and Germany (see below), to provide such insurance. These proposals are very significant because they depart radically from the Japanese tradition that families are primarily responsible for long-term care. Eligibility criteria will no longer take into account the extent of informal care available to patients; and ultimate responsibility for care will lie with the state rather than with families. The scheme separates LTC services from medical care insurance and will pay for institutional and home-based care not only for those aged 65 or more, but also for people over 40 years old with "age-related" diseases such as dementia. Each municipal government is deemed a provider, and levels of services are decided by the patients' impairment. Half the funding is from monthly premiums levied on people over 40, with a 10 percent co-payment at the point of service; rates are altered for those on low income. The rest of the funding comes from general taxation.

The scheme has two potential drawbacks. First, health and social services professionals in each municipal government will have to assess eligibility and decide on care plans, skills that have long been neglected in Japan. Second, the mechanism of quality assurance has not been clearly defined. The scheme nevertheless is a major departure in Japanese social policy (Arai 1997). It aims to underpin the development of a more diverse system in which users have more choice and may use the services they wish. It also hopes to promote the change from the excessive reliance on geriatric hospitals to sanatorium-type wards with suitable environments for long-term recuperation.

Germany introduced a new LTC insurance program in 1995. This required a considerable shift in focus from traditional rights to curative medical procedures toward long-term residential and home care, which previously had to be paid privately or from means-tested social assistance. There was political agreement that LTC costs threatened ordinary citizens with impoverishment in later life, a contrast with high levels of social expenditure available for health and pensions. After extensive public debate, a public insurance system was chosen, which requires equal contributions from all employers and employees; pensioners also contribute. Benefits from the LTC insurance may be taken in kind or in cash for home care and in kind for institutional care. Benefit payment levels are graded according to fairly narrow dependency definitions: dependent, seriously dependent (in need of extensive care), and very seriously dependent (needing extensive twenty-four-hour care) (Evers 1998). The cash alternative for home care is designed to allow private family-based arrangements to be made. Various additional benefits include short-term respite care to allow family caregivers four weeks' holiday, subsidized housing improvements, and contributions to the social security system. The new scheme, ostensibly a simple extension of the German insurance-based welfare approach, does create reliable rights for everyone in serious need of care as opposed to means testing. However, there have been discussions about the appropriateness of linking care costs to employer and employee payments. In addition, the LTC fixed-sum payments are likely to meet only part of the total costs of care. Residents of nursing homes in particular still have to spend individual resources, albeit at a slower rate. Due to the high proportion of recipients of home care initially opting for cheaper cash reimbursements, the system went into early profit and has amassed a surplus. This preference for cash has been taken to indicate the importance of the family in Germany's LTC, but some higher-cost medical care services can still be reimbursed from health insurance.

By contrast, even in some countries with advanced approaches to welfare, full-fledged support for long-term care remains highly dependent on local variations. In Canada, for example, what is regarded as continuing care has been called a "patchwork quilt" of long-term care, mainly institutional, and home or community care, mainly noninstitutional. The institutional components are widely provided across the country, with public and private funding. The noninstitutional components are developing, unevenly provided and also funded publicly and privately. While access to acute care is guaranteed, this is not the case for continuing care. The amalgam of services that compose continuing care involve the communitybased and residential LTC services outlined above. Funding varies by province in Canada, with decreasing federal support, and is typically still complicated by the situation of LTC at the interface of health and social welfare. Various types of continuing care are cost-shared between province and municipality of residence. Ownership of facilities nationally falls under three categories, and the relative balance varies considerably between provinces: public (49 percent), private for-profit (26 percent), and private nonprofit (25 percent) ownership. For illustration, Quebec has 78 percent and Nova Scotia 36 percent publicly owned facilities on average, but 100 percent of care facilities for advanced chronic mental and physical conditions are publicly owned in Nova Scotia. While funding comes from a variety of sources, there is a move toward universal rather than means-tested benefits, and cost sharing with users is the norm. In most provinces, people are not required to spend down their assets to receive public support, though they will usually have to co-pay daily rates for lower levels of care. Community-based nursing services are virtually universally supplied in Canada, although home care and support vary considerably. The picture is evolving, with increasing emphasis on noninstitutional care and budget reallocation to this sector.


QUALITY ISSUES

Quality of provision in LTC is of increasing international interest and revolves around standard setting, regulation, inspection, and ethics. It can require legislation and a mature and sensitive appreciation of care needs on the part of LTC providers and the many professions involved. Service quality in LTC residential settings has at least five dimensions (Duffy et al. 1997): tangibles (physical facilities, equipment); reliability (ability to perform promised services); responsiveness (willingness and promptness); assurance (conveyance of confidence and trust by personnel); empathy (caring, individualized attention provided by the facility). There is also an important economic aspect to quality related to costs of services delivered: value and satisfaction.

In addition to broader quality issues, specific features such as the use of restraints also give indications of the quality and respect for individuals in a LTC system. In this and other respects, international standards vary. For example, an eight-country study of use of restraints in nursing homes (Denmark, France, Iceland, Italy, Japan, Spain, Sweden, and the United States) found considerable variation. Total use of restraints was less than 9 percent in Denmark, Iceland, and Japan; between 15 and 17 percent in France, Italy, Sweden, and the United States; but almost 40 percent in Spain. The intensity of use of restraints and the types applied varied. In all countries, there was a constant increase in the use of restraints with increasing ADL difficulties and cognitive dysfunction (Ljunggren et al. 1997). It is clear that financial factors concerned with staffing levels, staff culture and training, the balance between better and less well trained staff, and the physical nature of facilities influence levels of use of restraints. Cultural variations and the thresholds for applying restraints also vary greatly internationally. The same is undoubtedly true of many other facets of LTC.

LTC–ISSUES OF POLICY AND PRACTICE

LTC systems have generally emerged as a series of incremental responses to a growing problem or set of problems, over a number of political eras and in many jurisdictions. The result is often a medley of noncomplementary and even conflicting programs for people with chronic disability, which are typically ineffective and inefficient. In many countries, especially in the developing world, there is still enormous emotional and even official attachment to care by the family. At the extreme, placing one's parents or relative into an LTC residential facility can be anathema. Even in countries such as the United States, with expensive health care systems and an established range of community-based programs, LTC does not work well.

It is doubtful whether a universal blueprint for LTC can be devised. The development and financing of long-term care services in many countries has been at best haphazard. Until the Japanese and German experiences, and perhaps those in Australia and the United Kingdom at present, elsewhere it has rarely been asked what the ultimate LTC system should look like. Most systems have evolved piecemeal and have suffered from being at the interface of technically expanding and expensive health care and lower-technology, but fragmented, social care.

Basic policy issues and questions arise. What should LTC encompass? How can the role of housing policy in LTC be recognized? Is LTC an individual, a family, an employer, or a state responsibility, or is it (increasingly) some complex combination of all of these? What is the role of the family, and how can it be supported? Should LTC be provided to various disability groups and ages? If so, how? What is the ideal balance and relationship between LTC and the acute health care sector? What should be the balance between the various residential, social care, nursing, ancillary services, and informal care? What resources should be devoted to home care, assisted living, and other options? Underpinning many of these questions is the basic philosophy within specific countries regarding collective and individual responsibility for vulnerable citizens.

Housing is clearly crucial to the success of LTC. The internal home environment and its interaction with the local external environment adds to the challenge of life for many people with chronic disabilities, and their ADL are compounded by their environment. Initiatives have appeared such as sheltered housing (assisted daily living), with wardening and support services, residential homes, and various schemes to assist adaptation of existing dwellings, but, in most countries, there has been little coherent policy development in this area. Ironically, many initiatives to build specialist housing for elderly or handicapped people have come from private sector developers, who have identified a new and underserved market segment for specialist housing. Aging in place and care in the community can often be enabled by relatively minor housing improvements. These may be administrative; for example, in public housing, there may be provision for flexibility enabling residents to exchange current units for more appropriate, often smaller ones. Many academic disciplines, including sociology, gerontology, planning, geography, environmental psychology, and architecture, can contribute to this important aspect of policy development.

What will future LTC look like? It can be provided in a number of different settings, by a range of personnel, and to people with varying types and levels of disability. Nevertheless, in many systems, institutional care such as nursing homes still represent the majority of expenditure on LTC. Residential and nursing homes do indeed often represent an important care option, but they would be unlikely to occupy such an important position in a newly designed LTC system. As many systems have gradually emerged piecemeal from a range of initiatives, they do not meet the needs of the recipients or providers of LTC today, nor the needs of those who pay for care. Internationally, there is little agreement about potential policy solutions. In many countries, thoroughgoing debate and reappraisal need to be initiated.


references

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Bartlett, Helen, and David R. Phillips 1996 "Policy Issues in the Private Health Sector: Examples from Long-Term Care in the U.K." Social Science and Medicine 43(5):731–737.

Binstock, Robert H., Leighton E. Cluff, and Otto von Mering 1996 The Future of Long-Term Care: Social and Policy Issues. Baltimore, Md.: Johns Hopkins University Press.

Cox, Carole 1997 "Long-Term Care: A Comparison of Policies and Services in Israel and the United Kingdom and Implications for the United States." Journal of Aging and Social Policy 9(2):81–99.

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Katz, S., A. B. Ford, R. W. Moskowitz, B. A. Jackson, and M. W. Jaffe 1963 "Studies of Illness in the Aged: The Index of ADL: A Standardized Measure of Biological and Psychosocial Function." Journal of the American Medical Association 185:914–919.

Ljunggren, Gunnar, Charles D. Phillips, and Antonio Sgadari 1997 "Comparison of Restraint Use in Nursing Homes in Eight Countries." Age and Ageing 26(S2):43–47.

Mahoney, F. I., and D. W. Barthel 1965 "Functional Evaluation: The Barthel Index." Maryland State Medical Journal 14:61–65.

Novak, Mark 1997 Issues in Aging: An Introduction to Gerontology. New York: Addison Wesley Longman.

O'Brien, Raymond C., and Michael T. Flannery 1997 Long-Term Care: Federal, State and Private Options for the Future. New York: Haworth Press.

Peace, Sheila, Leonie Kellaher, and Dianne Willcocks 1997 Re-evaluating Residential Care. Buckingham, England: Open University Press.

Ribbe, Miel W., Gunnar Ljunggren, Knight Steel, Eva Topinkova, Catherine Hawes, Naoki Ikegami, Jean-Claude Henrard, and Palmi V. Jonnson 1997 "Nursing Homes in 10 Nations: A Comparison Between Countries and Settings." Age and Aging 26 (S2):3–12.

Royal Commission on Long Term Care 1999 With Respect to Old Age: Long Term Care—Rights andResponsibilites. Report by the Royal Commission on LTC. London: The Stationery Office.

Tinker, Anthea 1992, 1997 Elderly People in Modern Society. London: Longman.


David R. Phillips

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