We are in a scientific and social service race against the very real challenges of aging demographics. We have the need for a two-pronged strategy. The first arm is enlightened prevention and health maintenance, intended to help elders maintain vitality and independence for as long as possible, by aggressively addressing those conditions that lead to disability and institutionalization. The second arm, which is complimentary to the first, is the creation of new environments which actively manage the changes and disabilities that come with advanced age.

Long-term care is part of the natural fabric of life. It is fundamentally different than acute care in that it integrates health services and supports for daily living. The explosive growth of the long-term care industry simply reflects the numbers, with a projected doubling of the over-65s and tripling of the over-85s in the next 50 years.(2,3). During this period, the number requiring long-term care is projected to grow from under 10 million to 24 million.(4).

But one should not confuse our future vision of long-term care with older images of restrictive nursing homes. Even with excellent health maintenance and prevention, most of us will need to confront the issue of long-term care. Fully 43 percent of those over 65 will require some long-term care services in their lifetime, including 52 percent of all women and 33 percent of all men.(5). What’s more, 51 percent of all Americans believe that it is likely that in their lifetime they will be responsible for the care of an elderly family member. (6).

What is it that causes individuals to require this support? The need for long-term care is measured by the limitation in capacity to perform certain basic functions or activities called “activities of daily living,” or ADLs. ADLs include bathing, dressing, getting in and out of bed, eating, toileting, and moving about. There are other activities, called “instrumental activities of daily living,” or IADLs, such as getting out, driving, preparing meals, shopping, maintaining a home, using a phone, managing finances and taking medications, which are critical and require help if absent, though not on the level of absent ADLs.

About 97 percent of nursing home patients have ADL limitations.(4). By age 85, the need for help is not at all unusual. Some 35 percent need assistance with walking, 31 percent with bathing, 22 percent with getting in and out of bed, 17 percent with dressing, 14 percent with toileting, and 4 percent with eating.

Most of those requiring long-term care prefer to “age in place,” in their own home and community, in familiar settings. And most do just that. In fact, the use of nursing homes is declining in all categories of aging, with numbers of nursing home patients over 85 declining by nearly 10 percent between 1985 and 1995.(7). Instead, what we see is nearly 90 percent of seniors living in their own homes, independently or with informal care that’s almost always provided by family or close friends. This compares with 4.5 percent who are living at home with professional care and 4.6 percent residing in nursing homes. (8).

The primary challenge for providing long-term care support for 4th and 5th generation Americans is falling predominantly on 3rd generation female family members. As Jim Furman, president of the National Council on Aging has noted, “We mistakenly define long-term care problems as medical concerns rather than disability concerns. The care needs of most frail older people are primarily supportive: for example, help them move from here to there, help them eat and dress, and help them keep track of their medicine.” (9).

If family members provide the muscle of home care, they also provide a significant portion of the dollars. For 40 percent of Americans, long-term care is the most costly purchase ever made.(10). More than 32 percent of the total costs of long-term care in 1999 came directly from patients, while the government shouldered approximately 56 percent of the bill – 38 percent in Medicaid and 18 percent in Medicare. Only 5.5 percent was covered by private insurance.(11)

As family members critically assess the financial consequences of these difficult decisions, costs are being assigned to each option. The ability to live independently at home is less expensive than institutionalization. But, as Gail Hunt, Executive Director of The National Alliance for Caregiving, says, “There’s a reason for that. The quality of life at home is better, yes, but only the Federal Government saves money. And that’s because family caregivers are the unpaid extensions of the healthcare system.” In 1992 it was roughly five times more expensive to be elderly and dependent in a nursing home versus independent in one’s own home.(12). The nursing home charge then averaged $29,000 per year.A decade later, the cost approached $60,000 per year.(12,13).

The race against the aging juggernaut, then, is about science, about independence, and about “aging in place.” Long-term care is rapidly evolving with a primary focus on dignity, personal autonomy, and support for caregivers.

What are the major trends in long-term care? First, less institutionalized care. Nursing homes are being reserved for the most severely impaired. Second, more reliance on home care and community-based alternatives. Day care options, blended services, “assisted living,” and care for the caregiver programs all signal a shift in emphasis that presages a shift in finances. Third, these environments will feature more choices, greater use of supportive new life-assist technologies, a greater emphasis on prevention, and the opportunity for shared learning and community-based strategic planning.

If one were to plan, what might emerge as the best environment for mature living? It would be a place that supports dignity and privacy, a place that balances personal autonomy with safety, a place that leverages technology to enhance personal security and safety, a place that provides stimulation and social interaction, and a place that assures easy access to affordable services.

There is a great deal of work to be done to get ahead of the aging curve. But we should be optimistic for two reasons. The solution relies on the goodness of America’s individuals, families and communities on the one hand, and on the power of innovation embedded in America’s scientific and medical enterprise on the other.

References:

1.Shalala D. The United States Special Committee on Aging. Long Term Care for the 21st Century: A Common Sense Proposal to Support Family Caregivers. Testimony before the United States Special Committee on Aging: March 23, 1999.

2.Administration Association for Homes and Services for the Aging (AAHSA). Nursing homes [fact sheet]. http://www.aahsa.org/section.aspx?id=48

3.The Growing Population of Persons Age 65 and Over: 1990 to 2050. Source: Cheeseman J. Population projections of the United States by Age, Sex, Race, and Hispanic Origin: 1995 to 2050. Current Population Reports. Washington DC: US Department of Commerce, Economics and Statistics Administration, US Bureau of the Census; February 1996. Publication No. P25-1130;12.

4.1994 Green Book. Overview of Entitlement Programs. Committee on Ways and Means, US House of Representatives. Washington DC; July 15, 1994. [Appendix B: Health Status, Insurance, Expenditures of the Elderly, and Background].

5.Kemper P, Murtaugh CM. Lifetime use of nursing home care. N Eng J Med. 1991;324:595-600.

6.National Partnership for Women and Families. When you become a parent to your parents: finding the balance [press release]. August 10, 1999.

7.Nursing Home Use Declining. Source: Bishop CE. Where are the missing elders? The decline in nursing home use, 1985 and 1995. Health Aff. 1999;18:146-155.

8.Long-Term Care Use by the Elderly. Source: Van Nostrand JF, Clark RF, Romoren TI. Nursing home care in five nations. Ageing Int. 1993:1-5.

9.New environments for mature living. The Pfizer Journal. Volume 3. Number 3. 1999.

10.American Health Care Association (AHCA). Survey finds boomers headed for financial disaster in golden years [press release.] Washington, DC: AHCA; 1999.

11.Who Pays for Long-Term Care? Source: American Association of Homes and Services for the Aging (AAHSA). Long-Term Care Financing [Backgrounder]. Washington, DC: AAHSA; 1999.

12.Expenditures for Healthcare. Source: Agency for Health Care Policy and Research. AHCPR Research on long-term care. http://www.ahrq.gov/research/longtrm1.htm

13.Reschovsky JD. The roles of Medicaid and economic factors in the demand for nursing home care. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070288/