Healing the Helpers

Researchers have known for years that looking after an aging loved one can be hazardous to one's health. Now they are finding out why. But will this information help us care for the caregivers?

After 9 years of caring for her mother, Shirley Poll knows that helping a sick loved one can be hard on the body. Every month, she flies from her home in New Jersey to a nursing home in East Lansing, Michigan, to visit her 92-year-old mother, Petie, who suffers from dementia. One day, while trying to lift Petie and her wheelchair, she pulled several chest muscles. A year later, back spasms plagued her. "You don't sleep very well, you don't eat very well, and you don't exercise," says Poll. "Caregiving finally gets you." And the rigors can be even tougher on people who help their ailing loved ones at home, 7 days a week.

Now research confirms that looking after an infirm family member can damage one's health. Over the past 20 years, a variety of studies have linked the strains of caregiving to high blood pressure, abnormally high insulin concentrations, and poor response to vaccines. A 4-year study at the University of Pittsburgh published in the Journal of the American Medical Association in 1999 showed that seniors who found caring for their ailing spouses physically or emotionally stressful were 63% more likely to die over the course of the study than comparable individuals of the same age who were not looking after sick loved ones. And shouldering the responsibility for an ailing relative or friend takes a similar physical toll on the young: A 1997 study of men caring for AIDS patients in California showed that even middle-aged caregivers are more prone to depression, colds, and backaches than individuals who have no sickbed duties. Such maladies make caregivers "the hidden patient that no one is looking at," says Joanne Schwartzberg, director of aging and community health at the American Medical Association.

After decades of looking at the risks of tending to others, scientists are now getting closer to understanding why caregivers get sick. The key might lie in how they deal with chronic stress. In a 6-year study published last month in the Proceedings of the National Academy of Sciences, researchers show that the concentration of stress hormones in older individuals who are nursing their loved ones skyrockets: Their production of interleukin-6 (IL-6) increases at a rate four times faster than the normal, age-related increase in the general population. High concentrations of this inflammatory protein--whose production spikes in response to stress--have been linked to arthritis, cancer, and adult-onset diabetes. The rapid buildup of IL-6 in these elderly caregivers suggests that their immune systems are "aging prematurely," says Ronald Glaser, a viral immunologist at Ohio State University College of Medicine and Public Health in Columbus, who headed the study with his wife, psychologist Janice Kiecolt-Glaser.

Because the average age of the caregivers in that study was 70, scientists still have a long way to go if they want to adequately explain how anxiety affects younger people who are ministering to ailing family members. But even without a complete understanding of how stress precipitates disease, researchers know more than enough to argue that our health care system should make caregivers' lives easier. "This is a public health issue," says Glaser.

According to the Administration on Aging, more than half of the Americans over 65 who are receiving long-term care rely exclusively on family or friends to take care of them, usually at home. Estimates of the number of informal caregivers in the United States in 2000 run from 25 million to 30 million. Medical economist Peter Arno of Albert Einstein College of Medicine in New York City calculates that the value of family caregiving in that year was between $140 billion and $389 billion--a figure that dwarfs the estimated $92 billion spent in 2000 on nursing home services. And as medical advances translate into more chronic conditions--diseases that would previously have killed patients or kept them in the hospital--the need for people to look after the ailing elderly can only increase.

Public health authorities have taken initial steps to help home caregivers. A handful of pilot programs around the country, for example, are experimenting with a plan that would allow Medicare payments to families who are nursing their loved ones. That kind of change in federal rules could help alleviate the stress on caregivers who struggle to pay medical bills and put food on the table while juggling medication schedules and arranging doctor visits.

But more must be done. In 2000, the Clinton Administration created the National Family Caregiver Support program to dispense funding to states for education and support for home caregivers. Such support programs help caregivers maintain counseling and support groups and provide for limited "respite" programs that allow home caregivers to be relieved occasionally by medical staff. In 2003 $155 million was budgeted for the program--a pittance considering the tens of millions of families who need the help. And in his 2004 budget, President George W. Bush proposed lowering that allocation to $142 million. Congress is also trying to get into the game. A bill that would expand respite programs has passed the Senate, but it faces an uncertain fate in the House, say advocates. In the meantime, various physicians' organizations encourage their members to ask potential caregivers about their responsibilities at home and to urge them to monitor their own health. But experts on the issue say that doctors are still largely unaware of the problem.

"The bottom line is that these are small solutions for a huge problem," says Gail Hunt, executive director of the National Alliance for Caregiving in Bethesda, Maryland. In an aging population, that problem will only worsen as home caregivers increasingly form the bedrock of our public health system. If we don't commit to bolstering that foundation, experts say, Shirley Poll’s story will be a familiar one to us all.

Eli Kintisch is a Washington, D.C.-based writer who hopes he won't be too hard on his future caregivers.