One million disabled adults lack adequate help with essential needs

March 12, 2004

About 3.3 million adults living in the community need assistance from another person in two or more activities of daily living essential for their survival, and nearly a million of those individuals need more help than they currently receive, according to a new study by researchers at the Disability Statistics Center at the University of California, San Francisco.

The study, the first to estimate how many additional hours of help people need, examined how adults with long term care needs find help with demands of daily life, including eating, bathing, dressing, getting into or out of bed or a chair, using a toilet, and other activities that are necessary to maintain their homes, such as shopping and preparing meals.

The study appears in the current (March 2004) edition of the Journal of Gerontology: Social Sciences.

"People receive about 93 percent of the help they need. It's the seven percent of the unmet need that is a issue," said study author Mitchell P. LaPlante, PhD, associate adjunct professor in the Department of Social and Behavioral Sciences and Institute for Health & Aging of the UCSF School of Nursing. Those living by themselves receive only 56 percent of the help they need, while those living with family members or friends receive 80 percent of the hours of help they need, the study found.

Unmet need is not a reflection of "insatiable demands for more help," according to the study. Rather, unmet need is associated with higher rates of adverse consequences on a wide range of measures, including discomfort, hunger, weight loss, dehydration, falls, injuries due to falls, and burns, particularly for those living alone.

"Even a modest amount of unmet need can jeopardize a person's ability to live independently," LaPlante said. "Unmet need likely increases the chances of an individual being prematurely institutionalized or being hospitalized, and reduces an individual's participation in society. These are large costs that, if avoided, would offset the cost of providing the additional help that is indicated. The reduction, if not the elimination, of unmet need for help is a financially achievable goal for the nation and one that long-term policy should focus on."

Those with unmet need are ten times as likely to go hungry because no one is available to help them eat as those whose needs are met (24.5 versus 2.1 percent), 20 times more likely to miss a meal because of lack of help with shopping (15.3 versus 0.7 percent), 5 times as likely to lose weight unintentionally (52.2 versus 10 percent), and almost three times as likely to fall because no one was around to prevent their falling (64.5 versus 24.5 percent).

"These are serious problems that compromise the safety, comfort and hygiene of individuals with unmet needs, reducing their ability to live independently and increasing their risk of institutionalization and possibly death," the study states.

Unmet need may result from the inability of informal helpers, such as family and friends, to balance other responsibilities. People without informal help, particularly those who live alone, depend largely on formal assistance, if affordable and available. Such public help remains biased toward institutional living.

Unmet need among people living alone is more an issue for the elderly than working-age adults, because two-thirds of those living alone and needing more help are age 65 or older, according to the study.

"Access to paid help is critical for people who live alone because they are much more likely to receive paid help than are people who live with others (62 versus 24 percent). Of people who live alone, those whose needs are met are more likely than those whose needs are unmet to get paid help (70.2 versus 50.3 percent). More than half of that help is reported to be paid by Medicare or Medicaid," the study states.

As a result, expanding access to paid help appears crucial in reducing unmet need among those who live alone. If the estimated shortfall in hours were to be provided through public funds, the cost of eliminating unmet need among people who live alone with low income ranges from $1.2 billion up to $2.7 billion, a relatively small amount. However, the cost for people who live with others is almost twice as large, from $2.2 billion up to $7.1 billion.

"Previous research, by looking only at the prevalence of unmet need for personal assistance services, creates a false impression that unmet need is a large and costly problem to resolve. In fact, only 6.6 percent of all needed hours of help are unmet among adults needing help in two or more essential activities of daily living," the study concludes.
Co-authors of the study are Charlene Harrington, PhD, UCSF professor of sociology and nursing; H. Stephen Kaye, a researcher with the UCSF Institute for Health & Aging; and Taewoon Kang, a researcher with the UCSF Department of Social & Behavioral Sciences.

University of California - San Francisco

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