Client Education

Care Giving and Caregivers

CAREGIVING: IT CAN BE HAZARDOUS TO YOUR HEALTH

By: Deborah Sullivan Brennan, Special to AccentCare

Experts on aging had long known that family caregivers can literally work themselves to death trying to keep loved ones alive. A recent study confirmed it. The report, published in December 1999 in the Journal of the American Medical Association, found that the life-giving care that older people give their sick spouses can hasten their own deaths.

Older spouses who were overwhelmed by caring for an ailing partner had a 63 percent higher risk of death than those who were not caregivers, the University of Pittsburgh researchers found. The results rang true with experts on the elderly and others involved in the care of seniors, who have long noted the danger of the caregiver becoming a patient.

"I have caregivers who are older — 60 or 70 — and are going through chemotherapy and the patient has Alzheimer's,'' said Rebecca Huerta Sussman, intake coordinator for Coast Caregiver Resource Center in Santa Barbara, Calif. "So you're talking about tremendous stress. And the caretaker may die before the patient as a result of it.''

The JAMA study followed 392 older people with sick spouses and 427 whose partners were not disabled over a seven-year period. After four years, researchers found that 40 participants with healthy partners died — a 9.4 percent death rate. The death rate among overstressed caregivers was nearly double that — 17.3 percent, or 31 of 179 study participants.

Researchers Richard Schulz and Scott R. Beach analyzed those results along with the study subjects?age, sex, ethnicity and baseline health to find that caregivers strained by their duties have a 63 percent higher risk of death than non-caregivers. This tragic twist may afflict millions of older couples battling old age and disease. As many as 15 million adults — mostly spouses and middle-aged children — care for seriously ill family members, the study estimates. Although experts on aging have long known that caregiving increases stress, depression and use of psychiatric drugs, the study is the first to show it also raises the risk of death, said Schulz, professor of psychiatry at the University of Pittsburgh and director of the university's Center for Social and Urban Research. "This is the first study to look at the mortality effect,'' Schulz said.

It's uncertain how caregiving contributed to those deaths. In the next three years, Schulz plans to investigate that question. "The combination of loss, prolonged distress, physical demands of caregiving and biological vulnerabilities of older caregivers'' might increase their risk for health problems, the study states.

Dorothy Ballard, 75, of Rochester, N.Y., devoted years of care to her husband, Harold, who suffers from congestive heart failure and diabetes, said their daughter Myra Kirkenaer, 49, of Carlsbad, Calif.

Even after she suffered a heart attack and underwent surgery for a tumor in her lung, Dorothy put Harold's health first. When doctors suspected she had a grave new illness, Dorothy couldn't find time to check it out. In April 1999, doctors diagnosed her with multiple myeloma ? a terminal case of bone cancer. Myra cared for both parents in her Carlsbad home from November 1999 until her mother? death in March 2000. Her father remained under her care. "My father's been this way for years and she was his primary caregiver," Myra said. "I think she would have gotten the multiple myeloma anyway, but the time it showed up was when my father was in and out of the hospital every other week, so she was under a lot of stress at that point. She was told she needed blood tests, but she put them off."

The Depression-Mortality Link

Do caregivers generally ignore their own health, perhaps eating and sleeping poorly and forgoing medical care of their own ailments? Or does depression itself sap their immune systems, leaving them vulnerable to disease and death?

"There's a well-known relationship between depression and mortality," Schulz said. "People who are depressed are more likely to die. And that association certainly applies to our sample and might explain some of our mortality."

Anand Kumar, an associate professor of geriatric psychiatry at the University of California, Los Angeles, said doctors have known for years that some caregivers fare worse than their patients, but have not had scientific proof until the recent study.

"It's a phenomenon that's been observed, described for a while," he said. "It's received more and more attention, but not enough." Since the 1980s, scientists have studied the psychological and physical health risks to caregivers. A study, published in The Gerontologist in 1986 found that caregivers use prescription drugs for depression, anxiety and insomnia two to three times as often as the general population. A 1997 survey of 1,181 California caregivers conducted by the Family Caregiver Alliance found that 58 percent showed "clinically significant depressive symptoms." The same survey also found that 76 percent of caregivers were female.

A study in the January 2000 issue of the journal Social Science and Medicine found that women who had colon cancer or were caring for husbands with the same disease were more emotionally distressed and less satisfied in their marriages than men in the same circumstances. In fact, women caring for cancer-stricken husbands felt more stress then women who were sick themselves.

Health Problems of Younger Caregivers

Previous studies have found elevated blood pressure and heart rates, lowered immune function and slower wound healing among some caregivers. The December 1999 JAMA study on caregiver mortality reports the most serious risks, but Schulz notes that it doesn't include middle-age people tending a parent or other older relative, and its findings of heightened death risks may not apply to them.

"We would not expect these kinds of effects among younger caregivers," he said. "It takes a combination of physical frailty and being relatively old and having high stress exposure that causes this negative outcome."

While caregiver strain isn't likely to be lethal to middle-age or younger caregivers in the "sandwich generation" ? those who are simultaneously caring for children and parents ? it could cause disease or worsen existing health problems, he said. With two disabled parents under her wing, Myra Kirkenaer felt her own health slipping. "You feel totally overwhelmed," she said. "You don't know which way to turn. I would cry in the shower before I had to go down and face the day."

She injured her back lifting her mother, and relied on Advil and muscle relaxants for about a week until the injury healed. She gained weight, she said, while her sister, Joan Ballard, 44, who shared in caring for their mother and father, grew thinner. As Myra's free time disappeared, so did the walks, swims and bike rides she used to share with her husband.

"The last time I went to the doctor I was found to have high blood pressure," she said. "I don't know if it? related to being a caregiver, but that's when it was detected." The sisters managed to find some respite through local support services. A hospice program provided several hour-and-a-half visits by a nurse or attendant each week during the last stages of their mother? illness. In addition, the sisters have found that attending a local caregiver support group together relieves the pressure of their daily grind.

"Sharing in a mutual environment is very helpful," Joan said. "My sister finds it helpful just to vent." As their mother's condition deteriorated, though, the sisters would not leave her unattended, and took turns going to the support group. Kumar said caregivers' physical and emotional troubles are often obscured by the urgent needs of the patient. "You take someone with Alzheimer's or cancer and all you talk about is the patient," he said. "No one asks about you. Your needs are placed on the back burner. You never become the patient; you?e always the caregiver. From a psychological model, you are experiencing neglect. And the fact that you are making the transition from a well state to a sick state doesn't get enough attention."

Schulz said preventing caregiver strain is the responsibility of the entire family and the medical community. "The caregivers themselves need to more carefully monitor their own well-being as far as stresses they?e exposed to, and to seek help when things get hard on them," he said. "Primary physicians might keep an eye on them and ought to know about the stresses they?e living with and the demands on them. Finally, family members, such as [adult] children who have a parent who? a caregiver, need to keep an eye on them to make sure they?e not overextending themselves, and step in to help."

Deborah Sullivan Brennan is a freelance writer based in Idyllwild, Calif. She previously worked for newspapers including the Los Angeles Times, the Los Angeles Daily News and the Palm Springs Desert Sun