How Rosalynn Carter’s Focus on Caregivers Fit into the Broader Theme of Her ‘Enduring’ Mental Health Activism

Dr. Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers, tells PEOPLE that mental illness remains taboo even today — and caregivers of people with severe cases are “often the most isolated”

In the wake of Rosalynn Carter's death, the tireless humanitarian and wife of former President Jimmy Carter is being remembered not just as a mental health advocate, but as someone who knew firsthand about the challenges that come with caregiving, leading her to establish the Rosalynn Carter Institute for Caregivers.

While Rosalynn's decision to found RCI in 1987 was inspired in part by personal experience, the organization's commitment to supporting other caregivers neatly expanded upon her ongoing efforts to better address mental illness.

"Caregivers are a population who struggle themselves with mental health issues because of the stress, strain, and isolation that caregiver roles often result in," explains Dr. Jennifer Olsen, the CEO of RCI who's tasked with carrying on the work Rosalynn started.

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

Rosalynn — who died on Sunday afternoon after entering hospice care following a dementia diagnosis — had an at-times difficult childhood in Plains, Georgia, learning the toll that caring for a loved one can take at an early age.

When Rosalynn was 12 her father was diagnosed with leukemia. She helped care for him as his health declined — and after his death, she was thrust into a more parental role, helping her grieving mother raise and provide for her three younger siblings.

Though it was her first experience with caregiving, it wasn't her last, and later in life she would famously declare, "There are only four kinds of people in the world — those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Related: Rosalynn Carter, 96, Enters Hospice Care Nearly 6 Months After Dementia Diagnosis

At age 18, Rosalynn married Jimmy Carter, a friend of the family, and as he rose the political ranks, she learned that with growing influence, she could start discussions about challenging realities of life that — while not unusual — often went unaddressed.

While Jimmy was Georgia's governor, Rosalynn was a member of the Governor's Commission to Improve Services to the Mentally and Emotionally Handicapped. After helping him successfully campaign to become president of the United States, the two moved to the White House, where Rosalynn's passionate involvement in the administration reshaped the role of first lady.

More than a president's wife, Rosalynn used her four years in Washington to lobby for change and maximize her slice of the bully pulpit. Though her engagement with politics reached far and wide, she would earn the most credit for drawing attention to the largely avoided mental health crisis, serving as honorary chair of the inaugural President's Commission on Mental Health, and helping to champion the passage of the Mental Health Systems Act of 1980, a measure that provided grants to community mental health centers.

Related: Jimmy Carter Calls Late Wife Rosalynn His 'Equal Partner in Everything' After Her Death at 96

In 1982, one year after leaving the White House and returning to their longtime home in Georgia, the couple founded The Carter Center, a soon-to-be global organization dedicated to "improving the quality of life for people at home and in the developing world through programs in peace and health."

And in 1987, she founded RCI to expand her portfolio of service, this time focusing specifically on the "invisible population" of caregivers who were weathering their challenges alone, Olsen explains.

"It hit many points and tied to many things that she was doing," says Olsen. "I think similar to the work she did with stigma around mental health, she was eager to use her voice and her platform to talk about issues that were kind of unspoken, things you'd talk about in the bedroom of your house, but not the boardroom of your organization."

Related: Remembering First Lady Rosalynn Carter's Life in Photos

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.

"I think she realized, when you think about it, caregivers of people with mental illness ... struggle with being able to reach out for help or talk about their struggle," Olsen says. "It's one thing to tell your colleagues or your friends that your spouse just received a cancer diagnosis. It's another to say that your sister or mother is struggling with an opioid addiction."

Olsen continues: "We still have so many issues that are undiscussed, and the caregivers of individuals with those undiscussed issues or severe mental illness are often the most isolated in this population."

All of RCI's work, she says, branches out from the simple question: What can we do to support caregivers? "Not necessarily to make the journey easy," Olsen clarifies, "but to make it less hard."

RCI offers training programs for caregivers, advocates for policy changes, educates employers on caregivers' need for work-life balance, and partners with organizations like FEMA and the VA to identify caregivers in need of extra support.

And beyond that, RCI builds community for people who can so easily feel alone.

As one caretaker, Sarah Rasby, told PEOPLE in August, connecting with RCI helped her find the words to understand her experience. "It was just this huge aha moment, like, I feel completely seen," said Rasby, a young mom who found herself caring for her twin sister after a sudden cardiac event. (After finding meaning in RCI's mission, Rasby decided to follow in Rosalynn's footsteps and become an advocate for caregivers herself.)

Related: Rosalynn Carter's Life in Photos

Rosalynn's family announced her dementia diagnosis in May with a lengthy statement that the former first lady herself signed off on.

"One in 10 older Americans have dementia, a condition that affects overall mental health," the statement read, in part. "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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That Rosalynn was transparent about her own health challenges in an effort to break down stigmas is no surprise to Olsen, who worked closely with Rosalynn.

"I think it's a testament to someone who has spent her whole life in a place of service," she says. "Even when I'd be talking to her on the phone or we'd be getting ready for a meeting, in the back of my mind, I'd think, 'Does she ever think about retirement?'"

"But when I asked her about that, she said, 'Well, I'm not working. I'm serving.'"

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