Stressors on Caregivers May Be Overlooked, Making Them ‘Hidden Patients’

TAMPA, Florida-Clinicians need to recognize the stress and demands of caregiving, and should help minimize the practical hardships of this new and often unfamiliar role, according to William E. Haley, PhD. "Caregivers can often make sacrifices," said Dr. Haley, director of the School of Aging Studies at the University of South Florida, Tampa. "We need to do what we can not only to insure that these caregivers get thesupport they need to provide care, but also to minimize the impact of caregiving." Dr. Haley discussed the physical and psychological toll that caregiving can take, at an Amgensponsored satellite symposium held in conjunction with the Geriatric Oncology Consortium. Caregiving can be a rewarding experience for some, Dr. Haley explained, even if the task proves to be highly stressful or financially burdensome. Some feel pride and self-esteem because of their ability to manage the problem. Older men, in particular, report a sense of personal growth for accomplishing something they thought was not possible. Others say caring for a loved one with cancer gives their lives meaning and purpose. However, the caregivers are "certainly at risk to be 'hidden patients,' particularly in a cancer setting," Dr. Haley warned. "We are concerned with the patients, and may overlook prob-lems in the caregiver," he said. To address caregiver problems, minimal interventions such as rest, exercise, or being involved in church, synagogue, or other spiritual activity may be sufficient. Some caregivers, however, may be candidates for formal counseling or psychotherapy. Clinicians can help to reduce certain stressors on the caregiver through a variety of interventions: for example, telephone triage can reduce the inconvenience of frequent travel for treatment, according to Dr. Haley. "It's important for all of us on the health care team to try to be active in intervening," Dr. Haley said. "We often give people advice, like, 'take care of yourself, take some time off,' but some sort of active intervention or prescription for change may be necessary," he added. "I recommend insisting that caregivers take scheduled, regular breaks from caregiving, for exercise, social activities, and hobbies," he added. "Such breaks will help caregivers sustain their ability to provide care which can be exhausting." The Toll of Caregiving Caregiving affects a broad range of individuals, as 80% of care for older persons with functional impairment is provided by family members at home, rather than paid caregivers, nursing homes, or other sources, said Dr. Haley. An estimated 22 million American households are involved in caregiving to relatives over 50 years of age; of that figure, about 7 million households provide care for a relative with impairments in activities of daily living, requiring a much greater degree of sacrifice. The medical literature on caregiving for cancer patients was summarized recently by Dr. Haley (Crit Rev Oncol Hematol 48:151-158, 2003). In one article, Dr. Haley and colleagues studied families caring for relatives with lung cancer who were in the end stages of hospice care. They found that families spent more than 100 hours a week for in-home care of the dying patient. This research also found that severity of patient impairment was less important in predicting caregiver depression than psychological and social factors, including family conflict, subjective reactions to stress, and social activity. These factors can best be addressed by skilled counselors (J Palliative Med 6:215-224, 2003). The Many Roles of a Caregiver "Caregivers in some sense have to become amateur nurses, social workers, and psychologists to manage all of the various symptoms that people may experience with cancer," Dr. Haley said, and juggling the physical, emotional, and mental demands of this role can generate a great deal of stress. Primary stressors, as identified by researchers, include factors such as the impact of taking the cancer patient to appointments, addressing the patient's physical or psychosocial needs, and dealing with end-of-life issues or grieving over the death of the patient. Secondary stressors include "spillovereffects" related to financial issues (for example, quitting one's job to provide home care) or social isolation resulting from the demands of caregiving. Perhaps as a result of these stressors, caregivers may be at increased risk of depression and mortality, studies indicate. 50% Show Elevated Depression In studies of highly stressed caregivers, 30% to 50% show elevated depression on self-report instruments; using stricter diagnostic criteria, about20% have clinically significant symptoms of depression. Dr. Haley and his colleagues found that spousal caregivers for lung cancer patients had rates of depressive symptoms at least twice that of demographically matched, noncaregiving controls (Hosp J 15:1-18, 2001). The burden of caregiving may also place caregivers at high risk of death. The Caregiver Health Effects study looked at stress and mortality in 392caregivers vs 427 noncaregivers aged 66 to 96 years, over a 4-year follow-up period. After adjusting for other risk factors, the investigators found that mortality was 63% higher in highly stressed caregivers vs either noncaregivers or caregivers who did not report mental or emotional strain (JAMA 282:2215-2219, 1999). Risk Factors for Poor Outcomes Most bereaved persons return to normal psychiatric function within 1 to 2 years after the death of a loved one, but 10% to 25% will have complicated grief, traumatic grief, or chronic depression, Dr. Haley said. Most bereavement studies do not consider the influence of caregiving, he added, but they do suggest that highly stressed family caregivers may be at high risk for poor outcomes. "Part of that [bereavement complication risk]" for caregivers, Dr. Haley said, "is pre-patient death depression, a loss of social roles, and decreased social activities or engagement- all problems highly stressed caregivers can experience." Dr. Haley urged oncologists to recognize the needs of caregivers, and to be prepared to refer family members for supportive psychosocial intervention, including support groups and individual counseling.