Surviving Caregiving

Even after treatment ends, cancer impacts caregivers as well as patients.
BY KATHY LATOUR
PUBLISHED: NOVEMBER 25, 2014
As the cancer survivor population has grown and cancer treatment has become increasingly outpatient, caregivers have assumed more responsibility not only for the diagnostic and treatment phases of cancer, but also for the medical and psychosocial issues of survivorship, often forgoing their own health and well-being.

The result is a population of cancer caregivers whose health—both mental and physical—is suffering, says Allison Applebaum, director of the Memorial Sloan Kettering Cancer Center Caregivers Clinic in New York, the first of its kind in the country that provides clinical care, research, teaching and outreach for caregivers.

“This generation of cancer caregivers may become the next generation of cancer patients,” she says, explaining that her concern comes from the reality that caregivers are navigating an increasingly complex health care system with little education or support, while at the same time trying to maintain the family financially and emotionally. The purpose of the caregivers’ clinic, Applebaum says, is to help caregivers maximize their ability to provide care to their loved ones while concurrently attending to their own self-care needs and those of the family.

More Time and Energy

The National Cancer Institute defines a cancer caregiver as a person who gives care to people who need help taking care of themselves, which includes formal caregivers such as health care professionals or social workers. Here the term represents what are thought of as informal caregivers, family members and friends, and while the number of those caring for someone with cancer is hard to capture, it was estimated to be around four million in the United States a decade ago.

Studies show that caregivers have a health status similar to the general population until they begin caregiving, when they more often report fatigue, sleep disturbance, impaired cognitive function, pain, and a loss of physical strength and appetite compared with noncaregivers. In addition, many caregivers have pre-existing health problems of their own.

“We want to work with caregivers from diagnosis on; that way we can prepare them for survivorship while their loved one is still in treatment.” —Allison Applebaum

There are several studies examining anxiety and depression at different times in a patient’s cancer experience: at the time of diagnosis, a year later and five years later. Great strides have been made in identifying distress among patients, Applebaum says, but where we are failing is in the needs of caregivers.

She explains that data show that the distress caregivers experience as they care for someone undergoing treatment does not dissipate when the patient ends treatment and moves into extended survivorship. “For many caregivers,” she says, “the symptoms worsen.”

A second concern, and what Applebaum says she sees among the caregivers in the clinic, is the challenge in renegotiating roles in the family when caregiving time is reduced and the patient moves into life after cancer.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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