Long-term care refers to all residential and health services required to support individuals with chronic disease or disability. In contrast, acute care refers to health services provided for a limited period of time, generally until a specific health condition has resolved. Acute care is usually provided in hospitals or outpatient physician offices. It is generally paid for by private or public health insurance, such as Medicare. Long-term care can be provided in a variety of settings, including nursing homes, assisted living facilities, or private homes. No single payment system is widely used for long-term care.

The well-documented aging of the U.S. population is attended by two demographic corollaries: dramatic increase in the number of individuals with physical disabilities and those with mental disabilities such as Alzheimer’s disease. These impairments are chronic and may be progressive as well.

The number of Americans 65 years of age and older is projected to increase from 12.4% of the population in 2003 to 20% of the population in 2030 (7). Americans 85 years of age and older, who are the heaviest users of long-term care, are the fastest growing segment of the population. The over 85 age group is expected to increase by 43% from 2005 to 2020 (7).

With advancing age comes increased physical frailty and dependence. The average nursing home resident is a woman in her 80s with some cognitive impairment and needing help with four of five activities of daily living (ADL), such as bathing, eating, dressing, transferring, and toileting. Alzheimer’s disease and other dementias are associated with increasing age. With the neurologic losses of dementia come further declines in functional abilities. The total number of Americans in need of long-term care is expected to rise from 13 million in 2000 to 27 million in 2050, representing an increase of over 100%. This is largely driven by the increasing number of elderly in need of long-term care, which will rise from 8 million in 2000 to 19 million in 2050, an increase of over 130% (2). With these projections for an aging population with attendant physical and mental disability, it is clear why health care experts refer to long-term care as “the looming crisis” (1). Federal and state governments are making efforts to educate the public about the need to prepare for long-term care choices and financing, but the complexity and need for individualization of choices makes that effort daunting. As a starting point, physicians and other professionals can refer elders and their families to the Medicare Website on long-term care (www.medicare.gov/LongTermCare/Static/Home.asp). Here, they will find basic information about types of long-term care, as well as general information about choices and finances. An interactive “Long-Term Care Planning Tool” may be an intriguing way for Web-savvy elders and/or their families to begin the discussion. At another government Website (www.longtermcare.gov/LTC/Main_Site/index.aspx), one can order a free “Own Your Own Future Planning Kit.” However, these general tools will not solve the specific dilemmas of individual elders and their families. Therefore, it is incumbent upon physicians and other professionals to be generally knowledgeable about long-term care, as well as knowing local opportunities, resources, and options.

What did our grandparents do for long-term care?

Why won’t that work for us and our patients?

First, our grandparents did not have the same life expectancy. In 1940, the survival rate from age 65 to age 90 was 7%; in the year 2000, that rate has more than tripled to 26% (3). Only recently do most people face the prospect of an extended old age, probably with one or more chronic disabilities.

Second, for those in earlier generations who did live into their seventh, eighth, or ninth decades of life, immediate and extended families were usually available for care giving. In years past, women typically worked at home, providing homemaking and care giving for children, elders, and other dependent family members. With the growth of women in the paid labor force, the increased mobility of U.S. families, and the rising rate of divorce, family-based long-term care has been strained (4).

Third, earlier versions of long-term care did include care sites that are used today, but they have
been transformed. Many counties in the United States developed county homes or poor houses for the sick or disabled indigent. Similarly, churches and synagogues sponsored homes for the aged that contained a mix of skilled nursing and personal care services. Although many of these government and faith-sponsored “homes” still exist today, they have undergone radical changes to keep pace with funding and regulatory changes.

The three historical sources of long-term care—family, faith-sponsored, and government—persist today. However, these sources alone are unlikely to be able to meet the rapidly increasing demand for long-term care services in the future.

When the Social Security Act was passed in the 1930s, no agreement existed on a national health care system. In the 1960s, in a partial move toward national health care, Congress passed legislation mandating government sponsorship of Medicare (acute health care for the elderly) and Medicaid (acute health care for the poor). Medicaid dollars (a mix of federal and state monies) also were designated for use by indigent nursing home residents.

The latter usage of Medicaid funds quickly became a major public health care expenditure. Nursing homes, as the only government-paid site for long-term care, grew rapidly. Middle-class families learned to “spend down” an elder’s resources to become eligible for an “MA” (Medicaid) bed. The state and federal governments watched with alarm as every bed certified by Medicaid was quickly filled, with no end to demand in sight. A nursing home industry arose, with for-profit and publicly traded companies joining an area previously dominated by faith organizations and county governments. By the 1980s, many states imposed a moratorium on new nursing home bed construction, and a lengthy Certificate of Need process was required to obtain authorization to build new nursing homes. At the same time that demand for publicly funded nursing home beds was skyrocketing, a crisis was looming in the quality of care being provided. A landmark report from the Institute of Medicine in 1985 detailed the ominous conditions that existed in many nursing homes and prompted the Nursing Home Reform Act contained in the Omnibus Budget Reconciliation Acts of 1987, 1989, and 1990. These reforms required greatly increased regulation and monitoring of nursing homes, which, in turn, increased costs.

By the early 1990s, with the demographic press of an aging population and crises in costs and quality in nursing homes, conditions were ripe to develop new alternatives for long-term care.

The term “continuum of care” refers to the expansion of options for elder care sites. Rather than having to choose between “staying in my own home” or “being put in a nursing home,” families and providers began to recognize that more options were possible (Table 33-1). Figure 33-1 portrays the relationship of frailty to the options for long-term care.