Caregivers feel depressed, alone
An estimated 25 million Americans provide daily care for chronically ill or frail relatives. In practical terms, caregivers are often the difference between keeping a client at home or facing a premature nursing home admission. Furthermore, the National Family Caregivers Association (NFCA) in Kensington, MD, estimates the U.S. health care delivery system would face an additional financial burden of a staggering $300 billion annually without informal caregivers.
Two recent studies confirm that there is a strong need for long-term care case managers to refer caregivers to caregiver support programs and respite care services. A new study by NFCA and Fortis Long Term Care in Milwaukee reports that feelings of isolation and depression among caregivers are six times higher than the national average. A second study out of Stanford (CA) University School of Medicine found that daughters serving as primary caregivers for an ailing parent may require even more support than wives caring for an ailing husband.
The NFCA/Fortis study targeted caregivers providing intense care. Intense care was defined as a minimum of 21 hours a week providing help with personal care such as bathing, dressing, or feeding, as well as activities like grocery shopping or transportation. More than 800 NFCA members responded to the mailed survey.
Results include:
· 61% of all respondents reported depression.
· 67% of all children caring for a parent reported depression.
· Depression was more frequent in caregivers providing constant care, intense care, or when care recipients needed assistance with the daily activity of walking.
· Reports of depression were not affected by gender, income, marital status, or how long the caregiver expects to provide care.
"The study bears out what many caregivers ask themselves everyday:'Does anybody know I'm out here?'" says Connie Ford, RN, vice president of product development and services for AdultCare in Deerfield Beach, FL, a Fortis company that helped with data collection and analysis. "Caregivers reported that this depression is accompanied by isolation, sleeplessness, and other physical conditions. Isolation combined with depression and other physical problems contribute to the overall cost of health care in this country," says Ford.
One physical condition common to caregivers is stress. Researchers at Stanford University School of Medicine recently compared stress levels in daughters who provide care for an ailing parent to those of wives who care for an ailing husband. The 1997 study included 81 women between the ages of 50 and 85 who lived in the San Francisco Bay area. Each woman was caring at home for a parent or spouse with dementia resulting from Alzheimer's disease, Parkinson's disease, or stroke. Roughly 57% of volunteers were wives caring for a husband. The remaining volunteers were daughters caring for a mother or father.
Volunteers underwent a laboratory treadmill test in which researchers measured their heart rates and blood pressure levels. Then researchers asked the women to return to the lab to discuss negative aspects of their caregiving experiences while their blood pressure levels and heart rates were monitored. In addition, each woman carried a device that measures blood pressure and heart rate every hour during the course of a normal day at home. At the same time, volunteers kept an hourly computer record of where they were and what they were doing as they completed daily activities.
"Our data suggest that, from a physical standpoint, daughters are a very important group to look at, and they may in fact be facing more difficult challenges that translate into actual effects on their cardiovascular system," says Abby King, PhD, an assistant professor of health research and policy with the Stanford Center for Research in Disease Prevention. King presented findings of the caregiver stress study at the recent Society of Behavioral Medicine meeting in New Orleans. "In general, it may be more of an imposition for a younger person who hasn't planned or bargained for that [caregiving role], as opposed to a wife, who has chosen to marry someone and may be more accepting of that person's illness."
Study findings include:
· Wives and daughters did not differ on treadmill test results.
· Wives experienced a greater increase in blood pressure during interviews about caregiving experiences.
· Daughters experienced more significant increases in heart rates and blood pressure levels than wives during daily interactions with care recipients in the home.
"In their computer logs, daughters recorded significantly more distress in interpersonal interactions with care recipients. They reported having more difficulty relating to their care recipient than did wives, and those reports were linked to increases in blood pressure and heart rate responses," says King.
The 81 study volunteers are now enrolled in a one-year supervised program in which they either follow a specified exercise routine or adopt heart-healthful eating habits. "In addition to looking at how their blood pressure responses relate to their caregiving experiences, we're interested in seeing how these interventions might have a positive impact on their health," she says.
[Editor's note: NFCA offers the caregiver network, a quarterly newsletter, the Cards for Caregivers program, and other support services for caregivers. For more information, contact: NFCA, 9621 E. Bexhill Dr., Kensington, MD 20895-3104. Telephone: (800) 896-3650.]
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