PLAINS — Rosalynn Carter famously noted that there are four kinds of people: Those who have been caregivers, who are caregivers, who will be caregivers and who will need caregivers. In other words, everyone.
Over the past nine months, the state and nation’s former first lady, known to many simply as Mrs. Carter, passed through those phases. In February, former President Jimmy Carter, now 99, entered hospice care at their home. Mrs. Carter’s health worsened as the months went by and the Carter Center announced in May that she was suffering from dementia.
Rosalynn Carter died Sunday at age 96.
When the Carter Center announced earlier this year that Jimmy Carter had opted out of further medical intervention and would enter hospice care at his home, the statement mentioned two groups of people supporting him: his family and his medical team.
The Carters’ situation is unique, drawing worldwide attention. It also highlights the role of unpaid caregivers, most of whom have far fewer resources to lean on. About 53 million Americans are caring for someone who is ill, aging or disabled, according to an AARP report.
Rosalynn Carter was thrust into a caregiving role at age 12, when her father fell terminally ill with leukemia.
That experience, and others throughout her life, inspired her in 1987 to found the Rosalynn Carter Institute for Caregivers to help those who are helping others.
She continued to build the nonprofit well into her 90s. In 2018, she hired Dr. Jen Olsen to be the institute’s chief executive. Olsen is an epidemiologist with experience fighting pandemics around the world for philanthropic and government organizations.
Olsen said that in 2020, when so many Americans were forced into caregiving roles by the pandemic, Rosalynn Carter challenged her team to “go national” and grow the institute’s footprint to cover the entire United States.
“This is definitely, in my perspective and in Mrs. Carter’s perspective, a public health issue. This is millions of people being impacted, and these people are critical,” Olsen said in a February interview. “They’re serving the most vulnerable and at-risk in our population. So how can we support those individuals?”
Credit: Rosalynn Carter Institute for Caregivers
Credit: Rosalynn Carter Institute for Caregivers
Researchers at the institute, which is housed at Georgia Southwestern State University in Americus, are working to help employers develop support programs for employees who find themselves in caregiving roles. The research staff is also exploring how caregiver bereavement can be better monitored and managed, as well as researching patterns across the caregiver population that could shape policy.
The institute uses a three-pronged approach to help unpaid caregivers through free programming, advocacy and partnerships with private companies and other nonprofits, including Cigna, the Wounded Warrior Project and even Sesame Street.
Revenue at the nonprofit jumped from about $1.5 million in 2020 to more than $9 million in 2021, thanks in large part to a $5 million grant from the Ralph C. Wilson Foundation. That allowed it to raise spending on its signature programs from about $60,000 to more than $2 million, while also investing in its information technology capabilities, expanding offices and hiring staff across the country.
Credit: Rosalynn Carter Institute for Caregivers
Credit: Rosalynn Carter Institute for Caregivers
Olsen said the Carters had a special talent for seeing “individuals and populations at the same time.”
“Both President and Mrs. Carter have given me examples of someone that they know who’s caring for someone else and asking, ‘Have we checked on them? How are they doing? Have they gotten resources?’” Olsen said. “Then the next sentence is, ‘Have you called the White House?’”
In the 35 years since founding the institute, Rosalynn Carter herself penned numerous open letters to sitting presidents, governors and congressional leaders urging them to make policy decisions that benefit caregivers.
A 2020 report by the institute highlighted some legislative achievements, including the RAISE Family Care Act, VA MISSION Act and others, but described progress as “intermittent and fragmented.”
Programs at Rosalynn Carter’s namesake institute include one-on-one coaching, peer support groups and training courses for unpaid caregivers, who often sacrifice their own health and well-being. The institute offers programs to caregivers of veterans and dementia patients at no cost.
A major challenge is figuring out how to help caregivers without adding to their tasks or workload. In an op-ed for The Hill and in the institute’s 2021-2022 policy agenda, Rosalynn Carter called for the creation of a federal Office of Caregiver Health.
“An Office of Caregiver Health would ensure that family caregivers are represented in discussions of health policy, legislation and budget negotiations. It also would help break down the silos that can obstruct progress by creating ways to help caregivers regardless of payer or condition,” Carter said in a press statement.
Even as Jimmy and Rosalynn Carter faced their own end-of-life care, Olsen said they continued to lift up and recognize the caregivers around them.
“That’s the chance we see in this moment,” Olsen said. “The gift that President Carter has given us is the chance to elevate those individuals.”
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