“Mostly, what I felt was helplessness.” That’s how Mark R., a 62-year-old therapist, described the experience of taking care of his wife during her treatment for colon cancer. The disease burden of cancer on patients is well known, but cancer may have an equal or even greater impact on the family and friends who act as caregivers.
Caregivers regularly experience symptoms of depression and anxiety, often at higher rates than patients themselves. Many caregivers show signs of subclinical post-traumatic stress disorder (PTSD). Caregivers report feelings of fear, uncertainty, hopelessness, powerlessness, mood disturbances, and guilt. Some speak of a sense of loss of personal freedom as their needs become secondary in the relationship. As Mark R. wrote, “I realized that my role now was exclusively to take care of her and not to expect or ask for any caretaking in return. Once I got my head wrapped around that idea, I was okay.”
The burden of caregiving also affects physical health. Caregivers report high rates of sleep disturbance, gastrointestinal symptoms, fatigue, pain, loss of appetite, and weight loss. They develop chronic medical conditions twice as often as non-caregivers, and face a 63% higher risk of mortality.
Caregivers’ coping strategies have a strong influence on how well they get through the experience. Acceptance is the coping strategy most commonly used by caregivers, and may be regarded as an active rather than passive way of adapting to a new reality. Emotionally-focused coping strategies are associated with a higher burden from caregiving, and an avoidance-based strategy is especially counterproductive. Depressed individuals are more likely to use avoidant strategies, such as behavioral disengagement, denial, and venting, and often rely on wishful thinking to ease the strain.
Anxious preoccupation and feeling a need for more support from family or friends are also strongly associated with depression in caregivers. People with fewer coping alternatives, limited support networks, and fewer economic assets are at high risk of negative consequences from caregiving. Caregivers are more likely than patients to increase their intake of alcohol or drugs and less likely to seek emotional support.
Women in the caregiving role outnumber men, and seem to experience the burdens more strongly. Rates of somatization, depression, and anxiety are consistently higher in women than in men, but they draw upon a wider range of coping options. Women are more likely to use instrumental support, emotional support, and planning, and thus can be seen as coping more actively than men, who tend to rely on acceptance. Women are also more likely to use religion to reduce psychological distress.
Health care professionals may respond to these gender differences in coping style by modifying their own communication strategies. Male caregivers may benefit from being addressed in a more cognitive manner that encourages acceptance of the patient’s illness. Female caregivers should be encouraged to rely on family, social, and religious support and to plan actively for the future.
The caregiver can be an important ally—or a serious impediment—to health providers. As Mark R. put it, “The caregiver can support the efforts of the medical team, explaining their rationale to the patient ‘off-line,’ remembering the details that the drug-addled patient didn’t process, and debriefing the patient’s response to the medical team’s communications. Alternatively, caregivers may be anxious or become angry when they don’t get what they want. Managing these competing tensions isn’t easy.”
Caregivers may be able to help mobilize their social resources by joining websites such as www.CaringBridge.org, where they can create a social network of their own that is centered on the patient and themselves, and www.caregiver.org, which offers guidance and support.
Readers, we want to hear from you!
• Does your facility offer help or support to the caregivers of cancer patients?
• What do you think is the greatest source of stress for caregivers?