Helping the Helpers: Aiding Cancer Caregivers
During any given year, an estimated 50 million people provide care for an extended period to a loved one with diseases such as Alzheimer's, Parkinson's, and, increasingly, cancer. In the latter case, researchers have now documented not only the extent of the duties these "informal caregivers" provide, but also the hefty emotional and physical toll it can take on them.
The role of informal caregivers in cancer care has expanded exponentially over the past decade, says Dr. Ann O'Mara, a program director in the NCI Division of Cancer Prevention. Among the chief reasons are: treatments are improving, and people with cancer are living longer; and many cancer treatments now are done in the outpatient setting, leaving problems such as side effects to be addressed at home.
"Caregivers are doing many things that were being done in a hospital 20 years ago," Dr. O'Mara says. "Things like providing wound care, administering medications, monitoring symptoms. So a lot of the responsibilities of formal caregiving have been pushed onto the informal caregiver. But along with that hasn't come the training they need to do the job."
This situation has created serious financial, physical, and emotional issues for patients and caregivers. Even the most well-intentioned, hardest working caregiver may not be in a position to ensure quality treatment. This may be especially true for those who are older and have their own chronic health problems, as well as for very young caregivers who simply are not prepared to take on that kind of responsibility.
On the latter point, for example, a study released last September by the National Alliance for Caregiving found that as many as 1.4 million youths between ages 8 and 18 were providing care to a relative; 400,000 of these were children between 8 and 11.
"We're asking the patient and their family members to be alert to symptoms that could be side effects of treatment; to monitor the frequency, intensity, and even patterns of those symptoms and complications; and to make decisions like whether to go the ER or increase pain medications," says Dr. Barbara Given, head of the Family Care Research Program at Michigan State University.
The emotional and physical strain of caregiving - which for many becomes the equivalent of a full-time job - can lead to problems such as depression, insomnia, and, as seen in one study of older caregivers, an increased mortality risk.
"There is a feeling of being overwhelmed that a lot of informal caregivers face," says Dr. O'Mara. "There is sense of loneliness and isolation."
Numerous studies have documented depression and other psychological problems among caregivers. A study of 200 cancer caregivers published last October in the Journal of Clinical Oncology, for instance, found that 13 percent met standard criteria for a psychiatric disorder.
Although NCI and several other NIH institutes are funding studies to aid caregivers in tasks such as symptom management and managing their own health, research into such interventions is still in its infancy. And researchers are just beginning to address how the quality of care provided in the home affects patient outcomes.
In the meantime, says Dr. Carolyn Messner, director of Education and Training at CancerCare, a national New York-based nonprofit organization that offers psychosocial, educational, and financial services to cancer patients and their families, there are ways to ease caregivers' burden.
"There is practical help out there," she says. "But often we have to help caregivers ask for help."
Many communities and organizations, she explains, offer services to help with tasks including grocery shopping, meal preparation, personal care, and transportation. CancerCare also provides financial assistance for things like childcare, transportation, and pain medications to patients and families. All 50 states have programs that offer assistance for long-term caregivers.
To ensure they can better understand issues such as managing symptoms, Dr. Messner advises caregivers and patients to be more proactive in communicating with their oncologists and other health care providers.
"Ask for special time to meet with the doctor," she says. "And ask permission to bring a tape recorder so you can record what is said because these are very critical discussions."
The burden for outreach, however, shouldn't all be on the caregiver and patient, stresses Dr. Michael Rabow of the University of California, San Francisco. In January 2004, Dr. Rabow and colleagues published a paper in the Journal of the American Medical Association that recommended actions clinicians and their staffs can take to support caregivers, particularly in end-of-life situations.
Although oncologists and other clinicians treating cancer patients have real limitations on how much time they can spend with caregivers, Dr. Rabow says little interventions by clinicians can do a lot for caregivers' well-being and their caregiving work.
"We have some data to say that when clinicians spend just a few minutes listening to the concerns of the family caregiver, just being an empathetic listener, it decreases their risk of depression," he notes.
He also suggests that clinicians take every opportunity to support family caregivers' work and address the common feeling that they aren't doing enough or doing well enough.
"Turn to the family caregiver and say, 'I think you are very committed, and I can tell from seeing your mother or your husband that you've done an amazing job as a caregiver,'" he says. "In many cases, the caregiver will start crying, because often they live entirely in a world dedicated to that sick person."
By Carmen Phillips