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The invisible caregiver: How can doctors care for them, too?

Unpaid. Unappreciated. Untrained. Undercounted. Exhausted. But vital.

By Delia O'Hara, amednews correspondent. Sept. 17, 2001.

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America's stealth weapon against chronic illness is a 46-year-old woman with a family, a high-school degree, a full-time job and a household income of $35,000. She has no particular training in health care. And, to tell you the truth, sometimes she doesn't feel that great herself.

That is the profile of the typical unpaid caregiver -- one of the many who provide an estimated 80% of the day-to-day tending the country's chronically ill receive, according to a 1997 survey conducted by the National Alliance for Caregiving and AARP.

Because unpaid caregivers -- men and women, relatives, neighbors or friends of the grievously ill -- are not counted in the health care ranks, they might as well be invisible. Their needs are seldom considered. Their ideas about what is going on with the patient are rarely solicited. Frequently, nobody even bothers to show them how to do the tasks they have taken on out of love and a sense of responsibility -- often at a huge cost in terms of time, money (not only in outlay but also in lost wages, pension credits and career opportunities), their own interests and health.

But whether we admit it or even realize it, the American system of long-term care would collapse without them.

A recent study by the United Hospital Fund of New York found that if these 25 million caregivers were compensated at the market rate, their services would cost nearly $200 billion per year -- about 20% of what the nation now spends on health care, and nearly twice the amount that goes toward home-health and nursing-home care combined. [...]