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End-of-Life Caregiving Is Rewarding But Challenging

And the task typically falls to relatives, survey finds

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.

HealthDay Reporter

FRIDAY, Jan. 12, 2007 (HealthDay News) -- Nearly three-quarters of chronically disabled individuals in the last year of life rely extensively on the aid of informal caregivers -- typically spouses, family members, or friends.

That's the finding of a study by researchers at the Johns Hopkins Bloomberg School of Public Health that was published in this week's Archives of Internal Medicine.

And even though the vast majority of the 1,149 survey participants said they found the experience of caregiving to be psychologically rewarding, they added that it's a heavy burden, exacting emotional, financial, and physical strains.

"These caregivers were providing 43 hours of help per week. That's like a full-time job," said study author Jennifer Wolff, assistant professor of health policy and management at Johns Hopkins. That effort is not typically factored into calculations of the cost of dying, Wolff added, but perhaps it should be. Estimates of the economic value of informal caregiving run easily into the tens of billions of dollars, she said.

Mary Jo Gibson, strategic policy advisor at the AARP Public Policy Institute, said, "From a public policy standpoint, this study reinforces the need for better support for family caregivers."

According to the study, caregivers are typically either a spouse or child of the patient, and about three-quarters are female. Nearly half reported receiving no additional outside assistance. Among the tasks caregivers take on, most assist in shopping and transportation, household jobs, and "personal care and nursing" -- which includes eating, dressing, bathing, and using the bathroom. Other tasks include assisting with finances, administering medication, and helping with indoor mobility.

The study also found that chronically disabled individuals and their informal caregivers relied extensively on support services directed at the patients' medical care. But they rarely took advantage of services -- such as support groups -- that would benefit the caregivers themselves.

As a result, caregivers reported heightened emotional stress, physical strain, and financial hardships. At the same time, however, they cited the emotional rewards of their efforts -- 76 percent who cared for a patient who had died within a year of the study said the experience made "me feel useful and needed."

According to Wolff, the study suggests that health-care providers must consider the patient and his or her informal caregiver as a unit, and involve the caregiver in decision-making processes and discussions. "The implication is that physicians and health-care providers should be aware that, in most cases, older adults have involved family and friends, and those people should be treated as partners in the care of this person," she said.

The caregiver's emotional and physical well-being should also be considered, Wolff added. After all, if caregiving is a full-time job, it's one fraught with challenges. What does the caregiver do if he or she needs a rest, for instance, or needs to tend to their own health? To whom do they complain when the job gets to be too much?

Gibson cited three needs for caregivers: assessment of the individual's health needs and the need for community-based support; training, for instance, in how to administer medications or lift a patient without hurting their backs; and occasionally, a break, or respite. She advised caregivers to reach out to support groups and other community services to give themselves some much-need relief. At the same time, she noted that many caregivers may not know they need help in the first place, or that it's available if they do.

"Caregivers often don't recognize what their own needs are," Gibson said. "It's hard to ask for anything for yourself, and so physicians and community-based service providers need to be proactive in asking of the informal caregiver, 'how are you doing?' because that's going to impact the whole family."

Donna Schempp, program director of the Family Caregiver Alliance in San Francisco, said: "The first and foremost thing I would tell people is, if you're going to become a caregiver, you need information, you need to know where you'll get support, and how you'll get breaks. People often fall into this job, and there's a lot they need to do in falling into this job that will help support them in doing the job they've chosen to do."

More information

For more information, visit the Family Caregiver Alliance.

SOURCES: Jennifer Wolff, Ph.D., assistant professor of health policy and management, Johns Hopkins Bloomberg School of Public Health, Baltimore; Mary Jo Gibson, strategic policy advisor, AARP Public Policy Institute, Washington, D.C.; Donna Schempp, program director, the Family Caregiver Alliance, San Francisco; Jan. 8, 2007, Archives of Internal Medicine

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