Although an effort has been made in this report to touch on all aspects of the long-term care landscape, not all possible users and providers of long-term care are addressed. The discussion often emphasizes the elderly and care in nursing homes. The information on providers and users of long-term care services in this chapter is based mostly on the periodic national surveys of nursing homes and home health and hospice care conducted by the National Center for Health Statistics (NCHS) and a few ad hoc studies of other providers such as board and care homes and assisted living facilities. It also draws heavily from the analysis of the characteristics of long-term care users by Spector and colleagues (1998) using data drawn from four principal data sources, with varying reference dates and sometimes varying definitions of terms such as disability.1 The data in their analysis rely on household surveys or surveys specifically of the elderly or of nursing home residents. Only one survey provides data on children using home and community-based services, and none includes people in state mental hospitals or in intermediate care facilities for people with mental retardation.
Adler (1995) estimated that in 1990, approximately 12.7 million people living in the community including certain institutional settings (about 5 percent of the total population) had long-term care needs. Nearly 58 percent of those with long-term care needs were aged 65 or over, and almost 81 percent were living in the community rather than in institutions such as nursing homes. The population with long-term care needs represented about 30 percent of a larger population of 42.7 million people (17 percent of the total population) who had disabilities.
Use of long-term care services may not always equate with need for such services. Some people who, by their own assessment or according to expert criteria, need long-term care services may be unable or unwilling to obtain care, even informal care from family members. Others who use formal long-term care services may not have functional limitations. For example, one national survey reported about 3 percent of nursing home residents needed no assistance with activities of daily living (ADLs) (Krauss and Altman, 1998). These residents, however, may have clinically complex conditions that require daily nursing care and monitoring.
Even though different long-term care settings tend to emphasize different types of care, they commonly serve mixed populations with
Much of the analysis was taken from the background paper commissioned from Spector, Fleishman, Pezzin, and Spillman for use by the Institute of Medicine committee. The principal data sources for this analysis are the 1994 Disability Supplement to the National Health Interview Survey, the National Long-Term Care Survey, the Assets and Health Dynamics of the Elderly Survey, and the nursing home component of the Medical Expenditure Panel Survey.