Research for a New Age

The phrase first calls to mind the traditional nursing home. But long-term care in the 1990s encompasses a growing list of options; board and care facilities, respite care, high-tech in-home care, special care units, and various levels of assisted living. These are the so-called formal long-term care options. In addition, millions of Americans receive care at home, usually from family members. In fact more than two-thirds of the older Americans who needed long-term care in 1985 (5.6 out of 7 million) received at-home, "informal" care.

The widening scope and complexity of long term care reflect society's increasing needs. Studies like the National Long-Term Care Survey and the Minority Long-Term Care Initiative are showing how many people will need long-term care in the coming decades and how best it can be provided.

How Can We Reduce the Need for Long-Term Care?
Walking, bathing, dressing, preparing meals: so basic are these and other activities to every day living that disability experts have given them a name - the activities of daily living - and use them to measure the degree of disability and need for long-term care. Not being able to manage the activities of daily living is one of the most common reasons people enter nursing homes. And physical frailty is often what keeps people from these activities and robs them of their independence.

Preventing frailty, therefore, is one obvious way to reduce the need for long-term care, and researchers are looking for ways to do precisely that. In NIA's clinical trials on frailty , exercise to strengthen muscles, balance training, and physical therapy show promise.

Another major reason that people enter nursing homes is urinary incontinence, and research in this area is also yielding results. Two practical ways to manage this problem - behavioral training and special exercise - are helping many people hold on to their independence.

While physical and functional problems may be the major reason that people need long-term care of some sort, it is not the primary reason for entering a nursing home. Studies show that living arrangement, not functional ability, are often the deciding factor. People living with a family member are much less likely to enter an institution than those living alone.

In other research, investigators have found that a caregiver's social circumstances and perceptions - of how heavy the caregiving burden is, for instance - often determine whether an impaired older person moves from informal to formal care. A caregiver's sense of burden and ability to cope depends at least partly on the amount of social support received from others and his or her relationship with the patients. Other stresses in the caregiver's life, such as having problems with children, also play a role.

Who Are the Caregivers?
Armed with these findings, researchers around the country are now exploring ways to create social support systems and strategies for caregivers. One of their first questions - who the caregivers are - is already yielding data.

About 2.2 million people in the U.S have daily personal care responsibilities for an older person, and the great majority of these - 72 percent - are women, mostly wives and daughters. In fact, caregiving responsibilities pass in a very predictable pattern with spouses being the first to assume the role of caregiver, followed by daughters, sons, daughters-in law, and other relatives, in that order. NIA-supported research also shows that most family caregivers do not report that their roles impose a burden on them, although some interesting differences have emerged in this area. Women who are caregivers are more apt to express a sense of burden than men but also are more likely to feel guilt about what they are not doing. Men caregivers are more likely to take advantage of services such as respite care, when available.

Findings like these suggest that men and women may need different kinds of support as caregivers. More information on caregiving supports and strategies is expected to emerge from studies with minority groups, who often use formal long-term care less than the general population, despite higher rates of disability.

LTC and Special Populations Long-term care (LTC) needs and resources vary widely among subgroups of the elderly. Greater need and fewer resources are frequently found among the oldest old, disadvantaged racial and ethnic groups, and those in rural areas. NIA's Minority Long-Term Care Initiative is exploring patterns of care among minority groups, social, and cultural - for their lower use of long-term care. One group with special needs consists of people with mental retardation who are now frequently living into their parents' old age and, in some cases outliving their parents or other family caregivers. Investigators in Wisconsin and Massachusetts are studying the needs of aging mothers of retarded adults. They are also looking at patterns of care, including the involvement of siblings, social networks, and formal services.

As America's population ages, sharp increases in the need for long-term care can be expected. NIA's EPESE project (Estabished Population for Epidemiological Studies of the Elderly) is gathering valuable data, such as that on nursing home usage shown in this chart, to help project the need for care in coming decades.