Long-term Care

After accounting empirically for methodological differences, three national population-based surveys from the period between 1999 and 2002 provide similar estimates of the size and characteristics of the older residential care population: About 2.2 million persons age 65 or older (6.5 percent) live in supportive settings, about 1.45 million of them in nursing homes and nearly 800,000 in alternative residential care. Depending on survey definitions of "facility" versus community settings, however, the estimated proportion of the residential care population in “community” settings ranges from about half to three-quarters. Elders in community residential care appear to have less severe disability and are far more likely to report no ADL or IADL disabilities than those in “facility” alternatives to nursing homes. The age and gender distribution of persons in residential care alternatives and nursing homes is similar, but those in residential care alternatives more likely to be white and less likely to have extremely low incomes.

This study estimates how informal care, paid formal care, and caregiver stress or burden relate to nursing home placement. Data came from the 1999 National Long Term Care Survey and were merged with administrative data. Results show that stress is a strong predictor of entry over follow-up periods of up to two years, and physical strain and financial hardship are important predictors of high levels of caregiver stress. The estimates indicate that reducing these stress factors would significantly reduce caregiver stress and, as a result, nursing home entry. We conclude that initiatives to reduce caregiver stress hold promise as a strategy to avoid or defer nursing home entry.

Understanding the role of informal caregiving in keeping chronically disabled elders out of nursing homes is increasingly important for policy. Demographic shifts are likely to increase the caregiving burden for a smaller number of caregivers per elder in the coming decades. This study examines how informal care, paid formal care, and stress or burden experienced by caregivers relate to nursing home placement. Data are from the 1999 National Long Term Care Survey and Informal Caregiver Survey merged with Minimum Data Set and other external data. Results from instrumental variables models indicate that stress is a strong predictor of nursing home entry over follow-up periods of up to two years, and that caregiving-related physical strain, financial hardship, and recipient behavior problems are important predictors of high levels of caregiver stress.

In recent years, several initiatives in publicly financed services for older persons with disabilities have focused on supporting community residence through greater beneficiary control and flexibility in choosing the services and supports that best meet their needs. This movement has gained strength from state efforts to "rebalance" public long term care spending from institutional care to community-based alternatives. State innovations in Medicaid-financed community based long term care have tended to move programs along a continuum from the traditional set of service benefits toward the ultimate flexibility that may be achieved with a beneficiary-managed individual budget to purchase a preferred menu of services and supports. The beneficiary-managed individual budget model originated in the Cash and Counseling Demonstration. This brief describes the evolution of the model since the original demonstration and provides an overview of state activity as of January 2006 in developing individual budget model programs for elderly beneficiaries.

Informal caregiving—unpaid help primarily provided by spouses and children—remains the most common source of long-term care for older persons with disability in the U.S. This report updates previously published trends in formal and informal care from the 1984 and 1994 National Long Term Care Survey. The earlier study found a significant decline in the number of family caregivers, accompanied by a significant increase in use of formal care from paid workers, especially in combination with informal care. Data for 1999 indicate that, contrary to the previous trend, formal care use fell dramatically between 1994 and 1999, while the rate at which spouses and children provided care remained stable. Increased reliance on only assistive devices or informal care accompanied the decline in formal care. In general, the greatest increase in use of assistive devices without help occurred among older persons with fewer informal resources and lower levels of disability.