Long-term care is a concept that is difficult to get one's arms around, and the definition is increasingly less clear as the characteristics of and delivery settings for primary, acute and long-term care become harder to differentiate. As the primary focus of our health care system has shifted from addressing acute care needs in the hospital to managing the chronic care needs of individuals across time, providers, and settings, one could argue that the terms "acute care" and "long-term care" have become almost meaningless.
While the boundaries have certainly become more blurred, long-term care's primary focus on helping individuals to achieve optimal functioning in society is and will remain an important distinguishing factor and one that warrants a separate definition. Furthermore, the intense involvement of family members (particularly spouses and adult daughters) in direct long-term care provision as well as overall decision making about options for care sets long-term care apart from acute care. Physicians, nurses and increasingly insurance companies play the pivotal role in identifying treatment options and delivering acute care. In contrast, families are frequently seen as co-equal beneficiaries of long-term care interventions, as the care provided to the elderly disabled person is also important respite for the family caregiver (Stone & Kemper, 1989).
Long-term care encompasses a broad range of assistance with daily activities needed by chronically disabled individuals over a prolonged period of time. These primarily low-tech services are designed to minimize, rehabilitate, or compensate for loss of independent functioning (physical and/or mental) due to an underlying condition or disability. The repertoire of services includes assistance with 1) basic activities of daily living (ADLs) such as bathing, dressing, eating or other types of personal care and/or 2) instrumental activities of daily living (IADLs) further categorized as a) household chores, such as meal preparation and cleaning; b) life management such as shopping, money management and medication management; and c) transportation. Services include hands-on and stand-by or supervisory human assistance as well as the use of assistive devices such as canes and walkers and technology such as computerized medication reminders and emergency alert systems that indicate to others (including family members) when a disabled elder fails to respond. They also include home modifications such as building ramps and installing grab bars and disability-friendly door handles.
Relationship Between Acute and Long-term Care
Long-term care needs emerge from underlying chronic medical conditions that occur at birth or during developmental stages such as arthritis, diabetes, dementia, cerebral palsy and chronic mental illness or from accidents that result in such conditions as traumatic brain injury and paraplegia. Long-term care, however, is not an extension of acute care; because it is sustained over long periods of time and involves primarily low-tech supportive services, this care is an integral part of the disabled elder's life (Kane et al., 1998).
Individuals who need long-term care also require primary care and acute care services when they are sick, but these services are temporary and episodic, and focus on curing an illness or restoring an individual to a previous state of better health. Feder and Lambrew (1996) found that among the five million Medicare beneficiaries with substantial long-term care needs (as measured by limitations in three or more ADLs), average Medicare expenditures in 1993 were $8,960 compared with $2,835 for those without substantial long-term care needs. Fifty-one percent of the expenditures were for inpatient hospital care, 28 percent covered physician and outpatient visits and another 21 percent paid for skilled nursing facility and home health care. The predominant strategy in long-term care is to integrate treatment and living for elders with functional disabilities, not to undervalue health care for those getting long-term care, but to incorporate health care into the context of the functions of daily life (Kane et al., 1998).
One of the reasons for the blurring of the boundaries between the various stages of medical care (acute care, post-acute care, sub-acute care) and long-term care is the confounding of setting with service provision. As more and more acute care and high-tech rehabilitation are provided in nonhospital (traditionally long-term care) settings such as skilled nursing facilities and one's own home, it is difficult to know where medically-oriented care stops and long-term care begins. Should medical interventions such as intravenous drug therapy, ventilator assistance and wound care delivered in a nursing facility, residential care facility or the home be considered acute care, subacute care or long-term care? Similarly, should medication management for chronically disabled elders, including administering injections and monitoring for adverse drug interactions, be considered long-term care or ongoing medical care? On the other hand, hospitals sometimes provide long-term care for their long stay patients and, as Kane et al. (1998) have noted, perhaps they should do so more often.
The fragmentation of funding sources adds to the confusion. Medicaid is the primary public payer for long-term care services (particularly nursing home care) and Medicare is the major payer for acute care services. Because services follow funding, the category has tended to be defined by the reimbursement mechanism rather than the goals of the intervention, the skills involved or the characteristics of the care recipients.
The Role of Residence in Long-Term Care
Unlike acute care, housing and services are co-equal needs in the long-term care policy arena. The residential dimension is an essential element of long-term care because where people live-including the physical and social environment-is a major factor in enhancing or impeding one's level of functional disability and independence as well as quality of life. Nursing home policies explicitly recognize the residential needs of the long-term care population by including room and board as well as care in the costs. The recognition of the housing component is not as clear in home and community-based policies. For the most part, the residential needs are taken for granted when care is delivered in one's own home, although there is increasing recognition that home modifications may help keep an individual in the community and reduce the need for formal services. The housing component is key to the development of residential care, but there is tremendous variation in the extent to which services are integrated with housing needs.
To sum up this discussion of how to define long-term care, several points are worth emphasizing:
- Long-term care is primarily concerned with maintaining or improving the ability of elderly people with disabilities to function as independently as possible for as long as possible.
- Services and housing are both essential elements in the development of long-term care policy and systems.
- Long-term care encompasses functional, social and environmental domains and is broader than the medical model that dominates acute care.
- Long-term care is primarily low-tech although it has become more complicated as elderly persons with significant medically complex needs have been discharged to or remain in traditional long-term care settings (including one's own home).
Care Settings
Long-term care is provided in a range of settings, depending on such factors as the needs and preferences of the individual, the availability of informal support and the source of reimbursement. Much of the gerontological literature refers to a continuum of care, identifying the nursing facility or nursing home as the most restrictive and one's own home as the least restrictive setting in the spectrum. There has also been a strong focus on appropriateness of setting, assuming a mechanism for judiciously matching an individual with a particular option. I and others (Kane et al., 1998) have challenged the "continuum" and "appropriateness" paradigms, arguing instead that services can be delivered in one of many settings, depending on a constellation of individual, familial and policy factors. One's home can be as restrictive as a nursing home, if an individual is homebound and is not getting the services required to facilitate some independence. In theory, a home-like atmosphere can be created in any environment, including the nursing home. Furthermore, the issue of appropriateness is quite subjective and may preclude exercising one's own choice, which is often paramount to an individual consumer.
Among the care silos that have been created primarily by reimbursement policy, the nursing home or nursing facility (as it is referred to by Medicare and Medicaid) is the major institutional setting for long-term care delivery. In 1996, there were 16,706 certified nursing facilities in the United States and an estimated 1.8 million beds in 1996 (AARP, 1998). A small number of people are receiving care in other facilities such as long-term care hospitals and psychiatric facilities.
Home and community-based care is a catch-all phrase that refers to a wide variety of noninstitutional long-term care settings ranging from various types of congregate living arrangements to one's own home. Residential care is one category of home and community-based care that includes such settings as assisted living facilities, board and care, and adult foster homes, although the boundaries between institutional and noninstitutional environments are far from clear cut. Many assisted living and board and care facilities are large buildings which strongly resemble either hotels or nursing homes in physical appearance and philosophy. Other residential care options are small, home-like settings which offer privacy and choice to residents. Some make services available (either directly or through contracts) to disabled residents; many, however, are long on room and board and short on care.
In contrast to nursing homes, which are licensed and regulated by the federal government because of significant Medicare and Medicaid reimbursement, residential care is handled by state and local jurisdictions. Consequently, there is no consensus on the definition of residential care and the nomenclature as well as the nature and scope of services varies tremendously (Mollica, 1998). One recent national study of assisted living (Hawes et al., 1999) reported an estimated 11,472 facilities with approximately 650,500 beds and 558,400 residents as of the beginning of 1998. The definition of assisted living in this study included facilities with 11 or more beds, serving a primarily elderly population, and providing 24-hour oversight, housekeeping, at least two meals a day and personal assistance with at least two of the following activities: taking medications, bathing and dressing.
Residential care tends to be viewed conceptually as an option for individuals who may not require nursing home level assistance but who are no longer able to remain in their own homes. As such, it is seen as a substitute for living at home and as the next step in a downward trajectory toward nursing home placement. However, states such as Oregon have been using residential care alternatives as substitutes for nursing homes, with substantial numbers of very disabled elders being relocated or placed in assisted living or adult foster homes.
Several forms of adult day care have been established to meet the needs of the elderly long-term care population and their families. The most common form is a social model of adult day care, in which relatively disabled elders receive ongoing supervision and personal care, as well as social integration and companionship in a group setting, usually during the work week from nine to five. A limited number of programs also operate on the weekends and a few are experimenting with evening and night hours. While serving both physically and cognitively impaired elders, a disproportionate number of people with Alzheimer's disease and other dementias use this option. It has been an important source of respite for family caregivers who would otherwise struggle to maintain their elderly relative at home. A less common, and more intensive, form of adult day care is the day health model. This option combines primary care with long-term care and is used by significantly disabled elders who often have multiple co-morbidities such as diabetes, heart disease and stroke. The Program of All-Inclusive Care for the Elderly (PACE) which will be described in more detail below, builds its program around the adult day health model.
The majority of the elderly population with long-term care needs lives at home, either in the home of a close relative such as a daughter, or in their own home with or without a spouse. Within the home setting, care is further differentiated between home health care, which includes some level of skilled nursing and supervised custodial care, and home care, which typically includes personal care services (e.g., bathing, dressing, toileting) and homemaker chore services such as meal preparation and laundry.
Who Needs and Uses Long-term Care?
The long-term care population is diverse in terms of age, scope and level of disabling condition. Of the estimated 12.8 million Americans reporting long-term care needs (as measured by the need for assistance with ADLs or IADLS) in 1995, 57% were over the age of 65. Another two out of five were working-age adults and 3% were children (National Academy on Aging, 1997). The prevalence of functional limitations increases substantially with age. Among the 229 million Americans under the age of 65, only .1% were institutional residents and 2% were living in the community with limitations in either ADLs or IADLs (Figure 1) (Komisar et al., 1996). In contrast, among the 34 million elderly in 1995, 5% were nursing home residents and 12% were living in the community with ADL or IADL limitations. This prevalence rate is significantly higher for the oldest old. Among those age 85 and over, for example, 21% were in nursing homes in 1995 and another 49% were community residents with long-term care needs (Figure 2) (Alecxih, 1997a).
The prevalence of dementia and other forms of cognitive impairment is more difficult to assess. Many cognitively impaired individuals manifest limitations in ADLS and/or IADLs, but these measures do not fully capture the entire cognitively disabled population. A 1996 consensus panel organized by the Agency for Health Care Policy and Research concluded that the rate of moderate-to-severe dementia is about two percent in people aged 65-69, four percent in people aged 70-74, eight percent in people aged 75-79, and 16 percent in people over 85. Researchers analyzing data from the 1994 National Long-Term Care Survey report that almost one million elders are severely cognitively impaired because they have Alzheimer's disease or another form of dementia (ASPE & AoA, 1998). A smaller study of older people in East Boston, using less restrictive criteria, concluded that 10 percent of the population over 65 and 47 percent of the population over 85 had some degree of dementia (Costa et al., 1996).
The proportion of people age 65 and older staying overnight in nursing homes fell by more than eight percent from 1985 to 1995 (Bishop, 1999). The decline was most striking for those over age 85, a population comprising more than half the total elderly nursing home population. Factors potentially influencing this decline include 1) a decline in the overall disability rates among the elderly; 2) the increase in Medicare home health use from five to nine percent between 1985 and 1995; and 3) the increased use of assisted living as a substitute for nursing home placement.
Preliminary analyses comparing samples of elderly nursing home residents from the 1987 National Medical Expenditures Survey and the 1996 Medical Expenditure Panel Study (Spillman et al., 1997) suggest some important changes in the characteristics of this population over the 10-year period. The population in 1996 is significantly older, with the proportion of those 85 and older increasing from 43.5% in 1987 to 49.3% in 1996. Nursing home residents are also more likely to be married, with that proportion increasing from 13.3% in 1987 to 16.7% in 1996. The institutionalized elderly in 1996 tend to be more severely disabled than the 1987 cohort, with the proportion with five ADL limitations up from one in three to over one in two. In addition, the population appears to be more cognitively impaired, with a much lower proportion of the 1996 cohort recognizing staff and a much higher proportion having difficulty making decisions relative to the 1987 nursing home residents.
Approximately 81% of the elderly with ADL or IADL impairments live in the community and tend to be much less disabled than those in nursing homes (Alecxih, 1997a). Three out of five are only disabled in IADLs and approximately 17% are considered severely disabled with limitations in three or more ADLs. According to recent unpublished data from the 1994 National Long-Term Care Survey (NLTCS) (Jackson & Doty, 1997), over one in three (37%) of ADL-impaired elderly living in the community report some level of unmet need (not receiving but needing help) or undermet need (needs more help than currently receiving). The vast majority of this group are people with unmet IADL needs, particularly in the areas of meal preparation, outdoor mobility and money management. Only 1.4% report unmet ADL needs and another 13.1% report undermet ADL needs. Additional comparative analyses of previous waves of the NLTCS indicate a decline in the proportion of ADL-disabled elderly reporting unmet ADL needs from 5.2% in 1984 to 2.6% in 1989 to 1.4% in 1994.
These findings are intriguing because they suggest that most elderly with long-term care needs believe those needs are being sufficiently addressed. It is important to remember, however, that most of the care is being provided "free" by family and friends, and that future declines in the availability of caregivers may contribute to an increase in perceived unmet need. This research also identifies a potential strategy for more effectively targeting public dollars to home and community-based care, particularly in cases where state and local funds are constrained. Most state programs now use some type of functional disability trigger for determining eligibility for benefits. If assessment tools could be refined to capture unmet and undermet needs, then funds could be allocated for this at-risk long-term care population on a priority basis.
While a cross sectional view of the elderly indicates a minority in need of long-term care services at any one point in time, the lifetime risk of service use after age 65 is substantially higher. The proportion of elderly likely to use nursing homes ranges from 39% to 49% depending on the database; estimates of those living at least two years in a nursing home after age 65 ranges from 16% to one in four (Alecxih, 1997a; Murtaugh et al., 1990). One recent simulation model (Alecxih, 1997a) found that elderly persons are more likely to use home care than nursing home care over their remaining lifetime (72% versus 49%) (Table 1). The average lifetime nursing home use is one year and the average home care use is a little over 200 visits. It is important to note that many users receive care for only short periods of time, while a small proportion uses substantial amounts of long-term care services.
To summarize the key points describing the elderly long-term care population:
- At any one point in time, slightly more than one in 10 people over age 65 are living in the community with some degree of long-term care need; another five percent are in nursing homes.
- The demand for long-term care increases dramatically with age, underscoring the need to pay special attention to 85 and over population.
- After age 65, elderly Americans have almost a one in two chance of spending some time in a nursing home; almost three quarters will have some experience with home care.
- The proportion of elderly people spending one or more nights in a nursing home dropped over the past decade, but the acuity level of those in nursing homes has increased.
- Among the community-dwelling elderly long-term care population, more than one in three report unmet or undermet needs, although most of the problems are with the less intense instrumental activities of daily living.
Who are the Care Providers?
As was noted previously, one of the unique dimensions of long-term care is the fact that, in contrast to more medically-oriented services, much of the care is unpaid assistance provided by family and friends. This has been true historically, and despite the persisting myth of family abandonment expressed by many policymakers, remains true today. Paid providers include both professional and paraprofessional workers.
Informal Care
The major long-term care provider is the family and, to a lesser extent, other unpaid (informal) caregivers. According to data from the 1994 National Long-Term Care Survey, over seven million Americans-mostly family members-- provide 120 million hours of informal care to functionally disabled elders living in the community. If the work of these caregivers had to be replaced by paid home care, the cost would run from $45 billion to $94 billion a year (ASPE & AoA, 1998). The overwhelming majority of noninstitutionalized disabled elders (about 95 percent) receive at least some assistance from relatives, friends and neighbors; almost two-thirds rely solely on unpaid help, primarily from wives or daughters. As disability increases, elders receive more and more informal care. Eighty-six percent of elders at greatest risk for nursing home placement (those with three or more ADL limitations) live with others and receive about 60 hours of informal care per week, supplemented by a little over 14 hours of assistance from paid helpers.
Although lacking statistical support, we know that many more relatives provide assistance to disabled family members living in nursing homes and still others engage in long-distance caregiving, arranging for the care of a parent who is geographically separated. The importance of having an informal support system is underscored by the fact that 50 percent of the elderly with long-term care needs and no family network are in nursing homes compared to only seven percent of those who have access to family caregivers (National Academy on Aging, 1997).
Experts on long-term care typically refer to the person who regularly provides the most assistance as the "primary" informal caregiver. Most disabled elders have a primary caregiver who provides the bulk of care and obtains and coordinates additional help from other unpaid and paid "secondary" caregivers. Data from the 1989 Informal Caregivers Survey (the last national survey of informal caregivers for the elderly long-term care population) indicate that almost three-quarters of the primary caregivers are women (ASPE & AoA, 1998). Thirty-six percent of the informal caregivers are adult children and 40 percent are spouses; the prevalence of spousal caregiving increases with the level of the care recipient's disability. Other relatives and friends are most often secondary helpers, assuming primary responsibility only when spouses or adult children are not available.
The average age of the informal caregiver is 60. It is not surprising, then, that the great majority of primary informal caregivers are not employed. They are either retired or have never been in the workforce because they belonged to a generation of women who "stayed at home". Among the 31 percent who are in the labor force, two-thirds are full-time workers. Employed caregivers provide fewer weekly hours of assistance than non-employed caregivers, but they still invest, on average, 18 hours per week. They are able to assume the primary caregiver role by relying on additional unpaid help from other family members and friends and by purchasing care, usually a supplement to secondary informal assistance. Even with that supplemental help, employed primary caregivers of severely disabled elders (those with three or more ADL limitations) provide between 32 and 39 hours of care per week.
Two-thirds of working caregivers report conflicts between work and caregiving that caused then to rearrange their work schedules, work fewer hours than they otherwise would have, or take unpaid leave of absence from work. Close to half of part-time employed female caregivers report working less because of elder care responsibilities. Sixteen percent of full-time working caregivers say that caregiving has caused them to work fewer hours than they would have without such obligations.
Formal Care Providers
Unlike acute care settings where the physician is the primary health professional, nurses provide the majority of professional-level care to the elderly long-term care population. Physicians are directly involved in long-term care as medical directors of nursing homes or home health agencies; they also are required to sign off on home health care plans. According to the 1996 National Sample Survey of Registered Nurses (RN), nursing homes or other extended care facilities were the employment settings for 170,856 RNs or 8.1 percent of all registered nurses (BHPr, 1998). More than 87 percent of RNs working full time in nursing homes serve as head or assistant head nurse, director of nursing or assistant director of nursing (IOM, 1996). The Bureau of Labor Statistics (BLS) reports that 112,217 RNs were employed by home health agencies in 1994 (NAHC, 1997). In addition, 182,110 licensed practical nurses (LPN) worked in nursing homes in 1994 and another 39,774 LPNs worked in home health care. Although LPNs are not allowed to assess or formally plan for care, they often serve in the capacity of charge nurse in nursing facilities (IOM, 1996). Primary responsibilities include supervising the care of the nursing assistants, passing medications and doing treatments, and directly monitoring residents' conditions.
The rehabilitative aspects of long-term care are most often addressed by therapists. In 1996 there were approximately 115,000 employed physical therapists (PT), with three-quarters working full time (BLS, 1999d). According to statistics from the American Physical Therapy Association (1999), almost 11 percent of PTs were working in skilled nursing or extended care facilities; 4 percent were in outpatient rehabilitation centers, and 10 percent were employed in home care. Only 314 physical therapists were certified in geriatrics in 1998 (American Physical Therapy Association, 1998). Another 73,000 individuals were working as occupational therapists or assistants in 1996 (BLS, 1999b; BLS, 1999c), with an estimated 29 to 31 percent of them employed in freestanding or hospital-based skilled nursing facilities or related long-term care settings (Shank, 1999).
The major provider of long-term care is the paraprofessional worker-the certified nursing assistant in the nursing home or home care worker who delivers the lion's share of the primarily low tech personal care and assistance with managing one's daily life. After informal caregivers, these workers are key to helping disabled elders maintain independence and quality of life. According to the BLS, an estimated 643,080 nursing assistants were employed in nursing homes in 1994 (IOM, 1996). Estimates of home care aides are more difficult to obtain because many workers are hired privately and may not be captured by official statistics; many are also working part time and may have more than one job during the same time period. BLS (1999a) reported approximately 697,000 homemaker-home health aides employed by home health agencies, hospitals and others in 1996.
Not surprisingly, the majority of paraprofessional workers are women. In 1997, an estimated 89.4 percent of nursing aides were female (BLS, 1998a). A 1995 survey of home care workers reported that 96 percent of those employed by agencies and 100 percent of the self-employed were female (Leon & Franco, 1998). Nursing home aides tend to be somewhat younger (mean age of 36.6 years) than home care aides (mean age of 46.7 years) (Crown et al., 1995).
To summarize the key points of this discussion of long-term care providers:
- Both formal and informal long-term care providers are overwhelmingly female.
- The vast majority of long-term care providers are unpaid family members (primarily wives and adult daughters) and friends who sometimes must balance competing demands such as employment to provide care.
- Unlike the acute care system where physicians direct most care, nurses and ancillary therapists are the dominant professional providers in the long-term care arena.
- The most important formal long-term care provider is the frontline paraprofessional worker (the certified nurse assistant, home health aide, home care or personal care worker) who has the most direct and ongoing contact with the disabled elderly person.
Outline
| I. Introduction
| II. Defining Long-Term Health Care
| III. The Three Legged Stool of Long-Term Care Policy
| IV. Trends in Long-Term Health Care Delivery
| V. Workforce Issues
| VI. The Future of Long-Term Care Demand
| VII. The Future Supply of Long-Term Health Care Services
| VIII. Sinking or Swimming Into the Future?
| IX. Conclusion
| X. References
| XI. Author