People with Alzheimer's disease or other types of dementia are often dependent or need help from others with certain aspects of daily life. And for the 11 million Americans with Alzheimer's disease or another dementia who live at home, 80 percent of this care is being provided by unpaid family members — not by health care workers*.
Demands on family caregivers can be overwhelming, especially in the later stages of the disease when the person with Alzheimer's requires more care. As a result, at least 40 percent of caregivers of people with Alzheimer’s disease report high levels of mental or emotional strain associated with providing care*. Strain — caused by a combination of stress and burden from the demands of providing personal and supportive care — is a serious problem that can adversely affect a caregiver's overall health and well-being.
Strained caregivers are, among other things, more likely than nonstrained caregivers to have symptoms of depression or anxiety; suffer from long-term medical problems such as heart disease, cancer and diabetes; have higher levels of obesity; and possibly be at higher risk for mental decline.
Helping Caregivers Care for Themselves
Researchers in the Rush University College of Nursing are studying ways to help caregivers of people with Alzheimer's disease take better care of themselves. An ongoing study, Telephone Resources and Assistance for Caregivers, or TRAC, is designed to develop caregiving skills and promote better overall health and well-being by increasing caregivers' physical activity.
What makes TRAC unique is its focus on the physical health of caregivers — an area that has previously received little attention but that is vitally important according to principal investigator Carol J. Farran, DNSc, RN, FAAN.
"Many studies address mental health needs but ignore physical health," says Farran. "And even the studies that do focus on physical health don't differentiate between caregivers to target those who most need help — those who are strained and at greatest risk for serious health problems."
While enrolling the nearly 200 family caregivers in the TRAC study, Farran and her colleagues were surprised to find that many were more physically frail than expected and had multiple chronic conditions.
"Many have high blood pressure, are overweight or obese, and by-and-large are sedentary," Farran says. "So they have their own health issues to cope with in addition to the health issues of the person they take care of. It's a lot to handle on their own, and that's one reason we want to help them to maintain a balance between caregiving needs and their own health-related needs."
A Valuable Resource for Caregivers
During the 18-month study, caregivers are contacted by trained professionals 19 times, via either home visits or telephone. The telephone counselors help caregivers address a myriad of caregiving-related concerns — from bathing to finding additional help with activities that create barriers to participating in physical activity.
"The focus isn’t necessarily on aerobic exercise," says Farran. "We take each person where they are with their physical activity and figure out how we can help them increase what they are already doing. For instance, if they regularly walk up one flight of steps a day, we recommend walking the stairs several times daily. The goal is to increase steps and to help caregivers to be more physically active."
Caregivers have expressed that they appreciate having a telephone counselor with whom they can talk about their specific caregiving concerns. Farran and her colleagues hope that this personalized approach will be an effective way to help strained and sedentary caregivers balance caregiving needs with their own health needs.
*Alzheimer's Association Facts and Figures (2010)
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Please note: All physicians featured in Discover Rush Online are on the medical faculty of Rush University Medical Center. Some of the physicians featured are in private practice and, as independent practitioners, are not agents or employees of Rush University Medical Center.
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