Responding to Caregiver Stress Syndrome

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What some in the medical community and media are now calling "Caregiver Stress Syndrome" is the physical and psychological impact of chronic stress and the demands associated with caregiving.

Research on caregivers has been ongoing for 25 years, and we have found repeatedly that many family caregivers suffer serious physical and mental symptoms as a result of the stresses of caregiving. Those symptoms include constant fatigue, sleeping difficulties, depression, anxiety, memory problems, high blood pressure, migraines, and lowered immune functioning resulting in higher susceptibility to infection. Caregivers are also more likely to neglect their health and mental health because of their caregiving responsibilities. Taken together, this cluster of symptoms and behaviors is sometimes referred to as "caregiver stress syndrome."

Millions of Americans care for a loved one at home, and are at risk of impacting their own health as well as the health of the person they care for. In a nutshell, "Caregiver Stress Syndrome" can result in two patients requiring attention – the caregiver and the care recipient.

The stress of caregiving is of particular importance to African Americans. The African American community has higher rates of many chronic illnesses to begin with – high blood pressure, diabetes, heart disease and stroke to name three. They also have less access to health care and are less likely to visit the doctor until symptoms become severe. When the demands of caregiving are added to these factors, it becomes clear that African American caregivers should seek out programs and resources that offer support.

Local aging service providers should be able to connect caregivers to helpful resources. Caregivers should look under Senior Citizen Services in the yellow pages of the phone book. Also, many voluntary health organizations including the American Cancer Society, Alzheimer’s Association, American Stroke Association, and Easter Seals offer caregiver support programs.

Caregivers can also find resources on the Internet. At the Rosalynn Carter Institute (RCI) web site, browsers will find an audio library and handouts from workshops dealing with a variety of caregiving topics. The RCI web site also has an assortment of booklets available for downloading or ordering. The RCI’s web address is Other organizations such as The Family Caregiver Alliance, ( and the Administration on Aging ( also have helpful resources on their web sites.

Caregiving research has led to the development of a number of effective programs to support family caregivers and prevent "caregiver stress syndrome." Unfortunately, most of these programs aren’t available to family caregivers because they haven’t been broadly disseminated in communities. The RCI is playing an important role in making these programs more widely available. The aim of the National Quality Care Network (NQCN), recently launched by RCI, is to build bridges between researchers who developed these programs and community agencies that would like to implement them.

This national network began this year with five partnerships in Alabama, New Jersey, New York, Texas and Vermont implementing research–based programs for Alzheimer’s caregivers. These five pilot projects are funded by a grant from Johnson and Johnson, and will be followed by additional partnerships in other communities for caregivers of different populations (e.g. cancer, stroke, etc). The RCI also provides an online resource center, where agencies can access information about effective caregiver programs.

The Rosalynn Carter Institute on Caregiving is committed to leadership to meet the challenges of our nation’s "Caregiver Crisis," realizing that all sectors of society – healthcare administrators, aging service providers, policy makers, researchers, educators and corporations – must come together to develop new solutions. Some corporations are rising to the challenge. Johnson & Johnson, for example is funding the five pilot sites discussed above. The goal for Johnson & Johnson and the RCI is to better support family caregivers and prevent the onset of "caregiver stress syndrome."

Caregiving will impact almost all of us in some way at some point in our lives. Former First Lady Rosalynn Carter says that there are only four kinds of people in the world – "those who are caregivers, those who were caregivers, those who will be caregivers, and those who will need care." The needs of family caregivers cannot be ignored any longer.


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0 Paul 2009-01-12 20:34
Caregiver stress syndrome is a growing problem in my community. It is not just with aging individuals, but with every family facing chronic illness and a broken health care system; combined with the need to miss work and lose income, and shuttle a family member around to doctors, many families are under stress. Our country needs a long-term care policy and needs to make a committment to families who do the majority of work in this area.
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