Caregivers Face Major Medical Hurdles of Their Own

Survey finds many lack health care and insurance

Please note: This article was published more than one year ago. The facts and conclusions presented may have since changed and may no longer be accurate. And "More information" links may no longer work. Questions about personal health should always be referred to a physician or other health care professional.

En Español

By Kathleen Doheny
HealthDay Reporter

WEDNESDAY, Aug. 24, 2005 (HealthDay News) -- Adults who spend time caring for a sick or disabled family member often have medical problems of their own, lack health insurance and are stressed by medical bills, according to a new survey released Wednesday.

About 16 million people -- almost 1 of 10 working-age adults -- are caring for a sick or disabled family member, according to the survey results. And more than 9 million of these caregivers said they had health problems of their own.

"What was surprising to us were the high rates of caregivers having health problems," said survey co-author Sara Collins, a senior program officer for The Commonwealth Fund, a non-profit foundation centered on health research, which sponsored the survey.

According to Collins, "45 percent of the caregivers have one or more chronic health problems, compared to 24 percent of those who are not caregivers. It looks like they are having a difficult time."

The data was collected as part of The Commonwealth Fund's Biennial Health Insurance Survey, conducted from September 2003 through January 2004. It surveyed 4,052 American adults aged 19 years and above.

Overall, the survey results showed that women represent two-thirds of all caregivers, with those between 50 and 64 years old providing the bulk of the care.

In addition, 44 percent of caregivers lived in households with incomes far below the federal poverty level, compared with one-third of non-caregivers.

Sixty percent of the caregivers said they had medical bill problems or medical debt, compared with just 39 percent of those surveyed who were not caregivers. Half of the caregivers said they had problems getting health care services due to costs, compared to 35 percent of the non-caregivers.

Thirty-four percent of caregivers were uninsured for at least part of the year, compared to 26 percent of those who aren't caregivers.

And only 51 percent of caregivers reported working full-time, compared with three-fifths of non-caregivers.

"Caregivers who have jobs miss a lot of days of work," Collins added. "Caregivers are more likely to miss days of work than are non-caregivers." More than a third of the working caregivers reported missing more than a week of work during the year, compared to 18 percent of those who are not caregivers.

The survey findings were no surprise to Donna Schempp, program director for Family Caregiver Alliance, a San Francisco-based support and service organization for family caregivers that also advocates changes in health policy to improve the situation.

In addition to the problems cited in the survey, such as medical bills, Schempp said that many caregivers who give up work to care for family members find it difficult later on to get insurance.

"They can get covered under COBRA (the federal legislation that provides for temporary continuation of health insurance at group rates for certain employees who leave jobs) for a while," she said. But once COBRA runs out, caregivers can have trouble getting coverage under an individual health insurance plan -- especially if they have developed a health problem that can be classified as a pre-existing medical condition.

Often, Schempp said, caregivers with insurance problems or a lack of insurance forego preventive services such as Pap smears, mammograms or other tests, boosting their risk for other health problems later on.

Collins and Schempp agreed that policy changes are clearly needed. While caregivers have some policy support -- including the Family and Medical Leave Act of 1993 and the Family Caregiver Support Program under the Older Americans Act of 2001 -- more changes are required, they said.

Advocacy groups are currently seeking laws in more than 20 states to guarantee that workers are paid sick days or family leave when they need to care for ill family members, Schempp said.

Until the policy changes are effective, caregivers who lack health insurance can seek out low-cost or free medical clinics, Schempp said.

But accessing free clinics or country-run facilities "is a double bind for the caregivers. It often requires lengthy waits, and the caregivers can't afford to leave the person they are caring for," she added.

More information

To learn more about how caregivers can take care of themselves, visit the Family Caregiver Alliance.

SOURCES: Sara Collins, Ph.D., senior program officer, The Commonwealth Fund, Washington, D.C.; Donna Schempp, L.C.S.W., program director, Family Caregiver Alliance, San Francisco; Aug. 24, 2005, The Commonwealth Fund: A Look at Working-Age Caregivers' Roles, Health Concerns, and Need for Support

Last Updated: