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At a time in her life when no one could criticize her for easing back on her work to help people who suffer from mental illness and other kinds of misfortune, she has instead turned her attention to yet another group to whom society has paid scant attention: those who care for chronically sick and disabled family members at home.
The burden of caring for the chronically ill is borne primarily by family members and friends, said Carter at a special symposium sponsored by the APA Auxiliary at APA's annual meeting last month in San Diego. Only 20 percent of the chronically ill in this country are cared for in institutions. Carter said she was surprised by the results of a recent study finding that about 25 percent of U.S. households have someone who is acting as a caregiver to a relative or friend. This means that as many as 25 million Americans are informal caregivers.
Carter noted that more and more people are going to need some form of caregiving in the future as people live longer. She pointed out that at the turn of the century, average life expectancy was 47; today it is 75. Moreover, because of advances in medicine and technology, people are able to live longer with a chronic illness.
"With the situation we are in now--more government cutbacks and managed care--so much more is going to depend on the family caregiver," observed Carter.
People who become caregivers often take on the role unexpectedly and are unprepared for the emotional, financial, physical, and practical demands that follow. Unfortunately, formal caregivers have added to the burden because they--whether physicians or community agencies--can be difficult to deal with and traditionally have not recognized the importance of caregivers in patients' lives.
"Caregivers often experience a great deal of stress, which impacts them physically and emotionally," said Carter. "Many caregivers experience severe anxiety and frustration. In fact, it is estimated that 50 percent become clinically depressed. A study by the Rosalynn Carter Institute indicated that 35 percent of professional caregivers and 50 percent of family caregivers feel they are burning out."
Carter's work with informal caregivers grew out of her previous work in the mental health field and her own experiences in dealing with ill family members. After the Carters left the White House, her alma mater--now Georgia Southwestern State University--had a small endowment for a mental health program, but she said she didn't want to replicate work she had already done at the Carter Center in the area of mental health. Instead, she decided to work with people who cared for those with mental illness, and soon the initiative broadened to include all caregivers--informal as well as formal. This led to the establishment of the Rosalynn Carter Institute in 1987 on the campus of Georgia Southwestern.
"The mission of the institute," said Carter, "is to understand the process of caregiving and discover new ways to benefit both professional (formal) caregivers, and family (informal) caregivers. We believe that the professional and family caregivers can work together to help each other on their caregiving roles and provide better help to those receiving care."
Carter also had firsthand experience with caregiving in her own family. When she was 13, her father suddenly became ill and died within six months. The next year her grandmother died, and her grandfather moved in with the family. He was 70 at the time and lived to be 95. "So I have seen the whole realm of caregiving, from the brief to the long range," said Carter.
Based on her personal and private experiences, Carter wrote the recently published book Helping Yourself Help Others: A Book for Caregivers.
The Rosalynn Carter Institute has undertaken two major projects whose ultimate goal is to support and educate caregivers. The first is a regional project started in 1990 called Care-Net, a network that helps formal and informal caregivers in a 16-county area in west-central Georgia. The second is the creation of the National Quality Caregivers Consortium, a group consisting of representatives from 27 major professional and advocacy organizations that deal with caregivers and are trying to devise a model for caregiving throughout the United States. Among the members is APA, represented by former APA president Paul Jay Fink, M.D., who was also a panelist at the annual meeting symposium.
Carter noted that Care-Net has been so successful in getting agencies and groups to work cooperatively in providing services to caregivers and their patients that the Rosalynn Carter Institute is now looking for ways to develop similar networks in other areas of the country.
In discussing some of the ways to help caregivers, Carter urged physicians to take the initiative in connecting with family caregivers and helping them deal with their roles and responsibilities. She added that psychiatrists are an important source of help for overwhelmed family members.
"I hope that other kinds of physicians will refer people to psychiatrists for help without any sense of stigma or failure being implied," she said. "I hope the day has come that we can do that."
Next, she said, caregivers must be helped before they become casualties themselves. "Caregiving, without help and without hope of relief, can be hazardous to the caregivers' health," she said. The Rosalynn Carter Institute has developed a caregivers' training program called "Caring for You, Caring for Me," which is now being published under a grant for wider distribution.
Third, Carter pointed out that formal caregivers have much to learn from informal caregivers. At an annual conference sponsored each year at the Rosalynn Carter Institute, caregivers are encouraged to tell their stories and share their ideas and insights about the caregiving process. She said that these discussions make it apparent that caregivers need better information and communication with formal care providers, and she urged organizations involved with caregiving to make caregiving issues a priority.
At the community level, there is much that can be done to support caregivers, Carter noted. People can volunteer to help caregivers with chores, give them respite by sitting with the ill person for a few hours, or even simply call them and ask how they are doing. Carter also said that she would like to see religious communities become more involved in caregiving issues.
"Caregivers are truly leaders in providing care and compassion in our society, and many are doing so without much recognition or assistance," Carter concluded. "I hope that we can explore ways to insure that we are doing whatever possible to provide assistance, support, and appreciation for caregivers."--C.F.B.
(Psychiatric News, June 20, 1997)