Published Friday, March 9, 2001

Caregivers looking for answers and advice, survey finds

Warren Wolfe / Star Tribune

NEW ORLEANS -- Despite feeling overwhelmed by demands on their time, Americans caring for sick or aging family members have a "tremendous thirst" for training and education, a new survey indicates.

"What we're finding -- and this is news for most medical companies -- is that caregivers are really the people who make the decisions and buy the products, and they want help," said Paul Alper, who conducted the survey of 1,254 caregivers.

The survey, made public Thursday at the annual American Society on Aging conference in New Orleans, is the first major study of how caregivers use health and medical equipment, he said.

His consulting company, Alper Associates of Charlestown, R.I., conducted the survey in partnership with three major caregiver organizations on behalf of clients who make or market health-care products.

The median age of caregivers in the survey was 55, most of them women. More than half help with bathing and dressing, and 40 percent help family members with eating and going to the bathroom. Half are spouses.

With a database of about 3,000 caregivers, Alper also will provide a report to the state of Florida to help planners learn more about caregivers and their needs. California is the only state with a comprehensive profile of its caregivers, he said.

Nearly two-thirds of those surveyed said they want training in use of products that help with incontinence, care of fragile skin and bathing. And among those who have had some training, 65 percent said they want more.

The survey also found that 87 percent of caregivers are the primary decision makers and buyers of health-care products.

"Too many medical-product companies think that the drugstore is their customer," Alper said. "In fact, caregivers -- the people who buy and apply those products -- are the real customers."

Many of those surveyed were recruited by the national caregiver groups, so they may be more aware of issues in their field than others among the nation's 25 million caregivers, Alper said.

The 3,000 who signed up with Alper's organization become members of the Caregivers Advisory Panel and receive a newsletter. They also are invited to test new products.

"The big payoff for them, though, is the feeling that somebody's actually listening, that they're getting a say about what works and what doesn't," said Connie Ford, a Florida nurse who supervises the advisory panel. "Caregivers too often feel like they're really alone, that nobody understands or values what they're doing."

About three in five caregivers have Internet access, Alper added, and there's a challenge in telling them "which sites may be helpful so they can use their valuable time getting information quickly."

The only organization doing that is the nonprofit National Alliance for Caregiving in Bethesda, Md., which has reviewed about 60 sites.

Alper's partners in the survey, which will be conducted annually, are the National Family Caregivers Association, Children of Aging Parents and the Well Spouse Foundation.

Warren Wolfe can be contacted at


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