Individuals need long-term care when a chronic condition, trauma, or illness limits their ability to perform independently activities essential to maintaining themselves or their households, or puts them at risk of behavior that may harm themselves or others. Different definitions of long-term care yield different estimates of the number of people who need long-term care services. In this report, we define a need for long-term care as needing assistance from another person to perform certain everyday activities or as residing in an institution such as a nursing home. Both physical and mental limitations can create a long-term care need. “Long-term care” is shorthand for the wide array of services provided to help compensate for these limitations. Most of the support needed is not complex medical care, but assistance from others with the routines of daily living. As such, long-term care often involves the most intimate aspects of people’s lives—what and when they eat, personal hygiene, getting dressed, using the bathroom. Services vary widely in their intensity and cost, depending on individuals’ conditions, the severity of their needs, and their environment. Long-term care assistance can range from helping a frail elderly person dress, eat, and use the bathroom to skills training and medication management for a mentally ill person to technology and nursing care for a ventilator-dependent child. Need for long-term care is generally defined, irrespective of age and diagnosis, by long-lasting limitations in the ability to undertake basic activities and routines of daily living independently. One common way to assess these limitations is to measure an individual’s ability to perform basic self-care tasks, often called the activities of daily living (ADL). These include eating, bathing, dressing, getting to and using the bathroom, and getting in or out of a bed or chair. Less severe impairments are often measured through the ability to perform household chores and social tasks, known as instrumental activities of daily living (IADL). These include going outside the home, keeping track of money or bills, preparing meals, doing light housework, and using the telephone. In addition, other criteria—such as the ability to attend school or behavioral problems—are sometimes used for children or people with mental illness, whose age or condition means that limitations in self-care and household tasks may not be as valid for assessing need. Families and friends provide the bulk of long-term care services to people who need them. Nonetheless, public and private spending on long-term care services was estimated to exceed $108 billion in 1993. About $70 billion of this money was federal and state government spending, primarily through the Medicaid program. Almost all the remaining $38 billion was paid by individuals and their families. Assuming the continuation of current spending patterns under current law, expenditures for long-term care are projected to more than double in the next 25 years. The long-term care population today includes an estimated more than 12 million Americans of all ages, in many different settings, who need assistance from others to carry out everyday activities as a result of physical and mental impairments. Contrary to popular perception, most people within this population live at home or in community residential settings, not in institutions such as nursing homes. The largest group is elderly, but approximately 40 percent are working-age adults or children. Of those receiving assistance from others, most are helped by family members and friends, while a much smaller number receive assistance from government programs. Most people who need long-term care do not live in institutions. Of the more than 12 million Americans estimated to need long-term care assistance, only about 2.4 million live in institutions, such as nursing homes, chronic care hospitals, or other facilities. (See table 1.) The remaining 10 million individuals live at home or in small community residential settings, such as group homes or supervised apartments. Most people needing long-term care are elderly, a total of about 7.3 million. Overall, approximately three-fifths of the long-term care population are elderly. (See fig. 1.) Nonetheless, a sizable proportion of people needing long-term care is under age 65—about 5.1 million working-age adults and 400,000 children with long-term care needs either reside in institutions or live in the community. Among the more than 12 million people with limitations in everyday activities, there is a considerable range in the intensity and severity of their need for long-term care. Some people need assistance only with household tasks, like preparing meals or doing housework, while others cannot even undertake basic self-care, such as eating and bathing, without help from others. Still others may have a long-term care need for supervision or guidance, because of their mental impairments, regardless of their ability to care for themselves. One common way to identify people with more severe needs is to focus only on those individuals needing assistance with self-care and to exclude those who only need assistance with less intense household tasks. This smaller group of 6.2 million people includes about 3.8 million adults outside of institutions who require another person’s help with at least one of the basic self-care tasks—eating, dressing, bathing, or using the bathroom—which are more essential to independent personal functioning, and 2.4 million people in institutions. The most severely disabled population—those who need substantial assistance—comprises approximately 5.1 million individuals. About 2.4 million of these people live in institutions because of their disabilities. Another 1.3 million adults live in the community and need assistance from others with three or more self-care tasks, for example, people with advanced multiple sclerosis who cannot eat, dress, use the bathroom, or get out of bed without help. Finally, researchers in the Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services estimate an additional 1.4 million people require significant assistance because of mental disabilities, even if they do not report needing help with three or more self-care activities. People with mental impairments—such as mental retardation or schizophrenia—may be physically capable of performing everyday activities without assistance, but may be unlikely to do them in a safe, consistent, or appropriate manner. Even with no limitations in self-care, they may engage in other inappropriate behaviors that are a danger to themselves or others and require substantial supervision. It is important to note that the actual number of people who ultimately participate in any program may differ from these estimates, depending on how need for assistance is measured and the level of demand for program services. Limitations in a number of self-care tasks are a good indicator of severity of need because the amount and intensity of long-term care assistance a person needs increase appreciably with the number of his or her impairments. Recent data confirm that the average number of hours of care received—both from family and paid sources—rises with the number of basic self-care activities with which an individual needs assistance. This increase is especially dramatic between limitations in two or fewer and three or more self-care tasks. In addition to the elderly and working-aged adults, children are an important component of the long-term care population and often have distinct care needs. Among young children, need for long-term care is harder to assess because their age makes the traditional measures of self-care and household maintenance inappropriate measures of their abilities. Infants and toddlers, for example, are not expected to dress themselves or prepare their own food, whether or not they are disabled. Instead, children’s long-term care needs may be assessed by other criteria, such as limitations in activities more typical for their age group. About 330,000 children living at home are unable to engage in major play or school activities because of disabilities such as epilepsy, asthma, or cystic fibrosis. A smaller population of approximately 170,000 children are severely disabled with conditions such as cerebral palsy or mental retardation and need assistance with self-care if they are 6 years and older or if they are under that age and have a similar level of impairment. An additional 90,000 children live in settings away from their families, such as a facility for those with mental illness or mental retardation, or homes for the physically handicapped. In the future, long-term care need will grow, but predicting the magnitude and composition of that growth is complicated by several factors. Experts agree that population aging will increase the number of disabled elderly needing long-term care over the next several decades, but no consensus exists on the size of that increase. In addition, estimates of future long-term care need among the nonelderly disabled are difficult to project. Finally, several factors, such as medical advances or changes in death rates, could increase or decrease need among elderly and nonelderly persons alike. The 21st century will be marked by a dramatic increase in the size of the elderly population as the large baby boom generation ages. While most elderly people are not disabled, the elderly as a whole have the greatest likelihood of needing long-term care. As a result of this population aging, researchers predict that the number of elderly needing long-term care may as much as double in the next 25 years. Figure 2 shows that recent projections of elderly needing long-term care reach between 10 million and 14 million by 2020, and 14 million to 24 million in 2060, compared with about 7 million today. While the sheer number of future elderly is expected to drive up demand for long-term care services, projections of the number of elderly needing long-term care in the next century vary because of different assumptions about the future prevalence of disability. Changes in death and disease rates among the nation’s older population, for example, will affect the need for long-term care. Long-term care need intensifies significantly with age, especially after age 85. It is this subpopulation, the elderly aged 85 and older, that is projected to grow most rapidly. Some researchers argue that medical advances have increased life expectancy but have not changed the onset of illness.