Rosalynn Carter’s Tireless Advocacy on Topics of Mental Health and Caregiving Comes Full Circle

A famous quote by former first lady Rosalynn Carter has been widely circulated this week, for good reason.

“There are only four kinds of people in the world: those that have been caregivers, those that are caregivers, those who will be caregivers, and those who will need caregivers."

Rosalynn spoke those words to bring attention to the importance of supporting those who care for others facing long-term illnesses or disabilities. A longtime advocate for mental health research, she now finds herself on the receiving end of caregiving, having recently been diagnosed with dementia.

Rosalynn's family revealed her diagnosis on Tuesday in an announcement that comes more than three months after her 98-year-old husband, former President Jimmy Carter, entered hospice care.

"Mrs. Carter has been the nation’s leading mental health advocate for much of her life. First in the Georgia Governor’s Mansion, then in the White House, and later at The Carter Center, she urged improved access to care and decreased stigma about issues surrounding mental health," a statement released by her family read.

The statement continued: "One in 10 older Americans have dementia, a condition that affects overall mental health. We recognize, as she did more than half a century ago, that stigma is often a barrier that keeps individuals and their families from seeking and getting much-needed support. We hope sharing our family's news will increase important conversations at kitchen tables and in doctor’s offices around the country."

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Rosalynn's work in the mental health field began before she commanded a national audience through the White House. While Jimmy was Georgia's governor, Rosalynn was a member of the Governor's Commission to Improve Services to the Mentally and Emotionally Handicapped.

Later, while her husband was president, she served as honorary chair of the President's Commission on Mental Health, ultimately helping to champion the passage of the Mental Health Systems Act of 1980, a measure that provided grants to community mental health centers.

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But the work continued even after her husband left office in 1981, following his single term as president. In 1982, the couple founded The Carter Center in Atlanta, an organization dedicated to "improving the quality of life for people at home and in the developing world through programs in peace and health."

Part of that mission is to bring together mental health organizations from around the country, to coordinate efforts on mental illness and the elderly, financing mental health services and research, and breaking through the stigma surrounding mental illness.

Mental health and caregiving is also the focus of the Rosalynn Carter Institute for Caregivers, which was established in the former first lady's honor at her alma mater, Georgia Southwestern State University. In 1994, Rosalynn authored a book drawing on research conducted at the institute. Helping Yourself Help Others: A Book for Caregivers, co-authored with Susan Golant, offers practical solutions to the problems caregivers typically experience, such as isolation and burnout.

In a 2012 interview, Rosalynn touched on her work in the caregiving field, which she said was a natural extension of her advocacy surrounding mental health issues. “My work with caregiving grew out of my mental health work,” she told Next Avenue. “I had seen so many families burdened with caregiving for those with mental health issues. When we convened a meeting in the 1980s to discuss caregiving issues, it quickly spread from there.”

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In the same interview, Rosalynn touched on her own experience with caregiving, such as helping care for her father when he was diagnosed with terminal leukemia (she was 12 at the time), and helping her mother with her siblings after he died from the disease just three months later. "I didn’t realize I was a caregiver until I got involved in this work," she said.

In her later years, she's also seen a return to the caregiving role, particularly as she assisted in the care of President Carter’s three younger siblings and his mother, all of whom died of cancer.

On Feb. 18, the Carter family announced that her husband, President Carter — the longest-living president of the United States — had terminated medical intervention and would live out the rest of his days at home in Georgia with loved ones.

Few updates have been provided on the former president's condition, but on Tuesday, the Carter family offered the latest update on Rosalynn's health, noting that she "continues to live happily at home with her husband, enjoying spring in Plains and visits with loved ones."

Now facing her own diagnosis, the former first lady's public announcement of her disease is noteworthy, experts say, for keeping mental health and caregiving at the forefront of the American conversation.

Speaking to Atlanta's 11 Alive News, Rosalynn Carter Institute for Caregivers CEO Dr. Jennifer Olsen said it is “the greatest honor of my life" to work for Rosalynn, who she added, "gently nudges you toward making big things happen.”

But more than that, Rosalynn's work is brave and inspiring, Olsen said: “This is another example where the Carters are leading the way and being open about what they’re experiencing, which I think is so courageous."