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 the US NCI and other NIH institutes are funding studies to ...
