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Improving Support for Caregivers

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By 1999 Progress Report by the NIA/NIH • • December 13, 1999

Perhaps one of the greatest costs of Alzheimer's disease is the physical and emotional toll on family, caregivers, and friends. As Alzheimer's disease makes inroads into a person's memory and mental skills, it also begins to alter his or her emotions and behaviors. Patients can experience extreme agitation and feelings of anger, frustration, and depression. They can begin to exhibit bizarre behaviors such as pacing, wandering, screaming, and physical or verbal aggression. These changes in a loved one's personality and the need to provide constant, loving attention for years on end are major reasons for caregiver exhaustion and depression, and for why AD patients are placed in nursing homes. A recent study analyzing data from more than 1,500 caregivers who participated in the 1996 National Caregiver Survey provides details on the physical and other costs of caregiving (Ory et al., 1999).

These data show that dementia caregivers spend significantly more time on caregiving tasks than do people caring for those with other types of illnesses. In addition, they report that this type of caregiving has a greater impact in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict than do other types of caregiving. The authors suggest that these findings point to a need for programs and support services tailored to the unique challenges faced by AD caregivers. This suggestion is supported by research conducted at Cornell University, which demonstrated the effectiveness of peer support programs that link caregivers with trained volunteers who have also been dementia caregivers (Pillemer et al., 1999). Not surprisingly, the researchers found that these programs were especially effective for those caregivers whose social support networks were weak before the program began. They also found that the intervention had the strongest positive effects on the psychological well-being of caregivers who were in the most stressful situations.

Other research conducted at the University of Washington, Seattle, and at the University of California at San Diego has attempted to fill gaps in our understanding of the psychological and physiological responses of caregivers to the chronic stress of taking care of an AD patient. These studies suggest that there is not a generic response to caregiving burdens, but that certain caregiver characteristics (being male), a lack of respite from caregiving responsibilities, and the presence of preexisting illnesses (such as heart disease), make some caregivers especially vulnerable to the stresses associated with dementia care. These vulnerabilities include increases in heart disease risk factors, such as cholesterol levels and blood pressure, and decreases in immune function indicators (CD4 counts) (Mills et al., 1999; Vitaliano et al., 1998).

Source: National Institutes of Health; National Institute on Aging

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