The Overlooked (and Overworked) Caregiver
According to the National Family Caregivers Association, more than a quarter of the adult population-54 million people-provided care for a chronically ill, disabled or aged family member or friend during the past year. They fulfilled approximately 80 percent of the necessary home care tasks themselves. One out of every four households (22.4 million) has someone caring for an elderly person, many of whom have cancer. More than 60 percent of all cancers happen in those over age 65.
Interestingly, family caregiving is no longer a predominantly female responsibility. Previous studies showed that as much as 75 percent of "family" care was provided by women. However, new results from a National Family Caregivers Association survey indicate a much more even split: 56 percent female, 44 percent male. Thirty-six percent of cancer caregivers report that caregiving takes more than 40 hours per week. And more than 60 percent of these primary caregivers suffer from depression.
An important study published in the journal Cancer found that low income, isolation and a poor relationship with the cancer patient are key factors that impact the emotional well being of those providing non-professional cancer care at home.
Researchers from the Academic Medical Center in Amsterdam, the Netherlands, evaluated the quality of life and mental health among spouses and partners providing at-home care for colorectal cancer patients. The study was conducted with 10 hospitals in the Netherlands and included 148 patients with newly diagnosed colorectal cancer and their partners.
The study found that caregivers had diminished mental health and quality of life when the patient was highly dependent on them, when a great amount of care was required, and when the caregiver felt that her/his activities were being disrupted.
Interestingly, less-educated caregivers and those providing explicit and continuous care were more likely to derive satisfaction from their role. On the other hand, less self-esteem was derived by caregivers with a high level of education. The authors suggested that a possible explanation might be that caregivers in higher socioeconomic classes perceived a more striking difference in status when comparing their role as caregiver with their other current or prior role.
A report in the journal Social Science and Medicine found that spouses of colon cancer patients often have higher levels of emotional distress than the patients themselves. This is especially true for female spouses, said lead author Laurel Northouse of the University of Michigan School of Nursing in Ann Arbor.
The study focused on 56 male and female patients and their spouses, examining their patterns of emotional reactions, adjustments and stress related to the illness. While emotional problems increased at diagnosis for both the patients and their spouses, the spouses did not adjust to the illness as quickly, continuing to have strong adjustment problems for longer periods than the patients.
Spouses of both genders were found to be highly affected by their role as caregivers, undergoing more emotional distress and lower levels of family support than the patients they cared for. Women, however, generally experienced more stress and more adjustment problems than men, and were more susceptible to the emotionally negative effects of the illness-whether as a patient or a spouse.
For older people, the burden of caregiving for a loved one can be even more significant-if not overwhelming. An article published in the Journal of the American Medical Association found that the physiologic stress associated with providing care for a disabled elderly spouse can actually increase the risk of mortality for their caregiver.
Drs. Richard Schulz and Scott Beach of the University of Pittsburgh compared the mortality rates of 392 individuals who cared for spouses unable to perform at least one typical daily activity, with 427 age- and sex-matched non-caregivers. Both groups were 66 to 96 years of age.
They found that those who were providing care and experiencing caregiver strain had mortality risks that were 63 percent higher than those whose spouse was not disabled. They further noted a seven-fold increase in the risk of mortality among caregivers who were themselves frail or ill.
And the toll is not only medical-and not endured only by older caregivers. A survey conducted by the National Alliance for Caregiving and the National Center for Women and Aging at Brandeis University concluded that the long-term costs borne by younger caregivers who care for elderly loved ones are substantial in terms of lost wages, benefits and career mobility.
These caregivers lose an average of $659,139 over a lifetime in terms of lost wages, retirement income, Social Security and pension benefits, the study found. Beyond the direct financial loss, caregivers miss out on promotions and training that could help them advance in their careers. Nearly one in three of the survey participants said that caregiving limited their opportunities for acquiring new skills. Overall, 40 percent said that caregiving hampered their ability to advance on the job in one way or another.
SOURCES:
Eldercare Quarterly, Caregiver Network, Inc., Summer 1998
The Journal of the American Medical Association, December 15, 1999; 282:2215-2219, 2259-2260
National Cancer Institute (http://www.nci.nih.gov)
Cancer, August 15, 1999
Social Science and Medicine, January 2000; 50:271-284
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