Former first lady Rosalynn Carter has dementia, family announces

News comes months after husband Jimmy Carter entered hospice.
First Lady Rosalynn Carter and daughter Amy at the Atlanta parade on July 4, 1981.  (AJC Photographic Archive, Georgia State University Library)

First Lady Rosalynn Carter and daughter Amy at the Atlanta parade on July 4, 1981. (AJC Photographic Archive, Georgia State University Library)

Former first lady Rosalynn Carter has spent decades tirelessly advocating to address mental health issues and to remove the stigma around related illnesses.

On Tuesday, a day before the end of Mental Health Awareness Month, the Carter family announced the longtime wife of former President Jimmy Carter has dementia.

“The family made the decision to announce this now, and it aligned with her lifetime of selfless work,” said Paige Alexander, chief executive of the Atlanta-based Carter Center. “They wanted to do this now to tell her story and to lead the conversation about dementia and what caregiving means.”

In a statement released by the center, the Carter family added that Rosalynn is “enjoying spring in Plains and visits with loved ones.”

“One in 10 older Americans have dementia, a condition that affects overall mental health,” the statement read. “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.”

In February, the Carter family announced that Jimmy Carter, Rosalynn’s husband and the former U.S. president, had decided against any further medical treatment and entered home hospice care.

At the time, the Carter Center did not elaborate on the former president’s condition. But over the past decade, Jimmy Carter — who is 98 years old and the longest-living president in U.S. history — endured a host of illnesses. Rosalynn Carter is 95.

The Carters have been at home together in the tiny rural town of Plains, in the same ranch house where they have lived since 1961, absent their time in the Georgia governor’s mansion and the White House.

Former President Jimmy Carter and First Lady Rosalynn Carter wave to a beauty queen during the Peanut Festival on Saturday September 26, 2015 in Plains. The Carters are a major presence at the annual event, including the 2016 festival where they signed books, handed out road race awards and took in the parade. Ben Gray / bgray@ajc.com

Credit: Ben Gray/AJC

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Credit: Ben Gray/AJC

Earlier this month, the couple’s grandson Jason Carter told the Associated Press that the former president was still enjoying peanut butter ice cream and was well aware of the tributes and well wishes that have flooded Plains from around the world.

“That’s been one of the blessings of the last couple of months,” said Jason Carter. “He is certainly getting to see the outpouring and it’s been gratifying to him for sure.”

Tuesday’s announcement of Rosalynn Carter’s health condition harkens to the work she has tackled most of her life: mental health and caregiving.

When her husband was running for governor in 1970 she would often run into people whose families were dealing with some form of mental illness or facing difficulties in trying to find care for family members. She became a high-profile advocate for mental health during her husband’s presidency, making it one of her lasting legacies.

Her Mental Health Program at the Carter Center has hosted an annual symposium of national mental health leaders to form policy. It also has created a journalism fellowship program to encourage accurate reporting about mental health issues. In 2010, she wrote the book, “Within Our Reach: Ending the Mental Health Crisis.”

Photo by Rick McKay/Washington Bureau slug: COX-RCARTER-1130 WASHINGTON......Former First Lady Rosalynn Carter was on Capitol Hill Thursday lobbying congress for a 'parity' bill that would force insurance companies to cover mental illness the same way they do physical illness. The legislation was passed by the senate but not taken up in the house and is now in a conference committee, where it's fate will be decided within days. Carter joined a number of Senators at a press conference to urge passage of the legislation. (Photo by Rick McKay/Cox Washington Bureau)

Credit: Rick McKay/Cox Washington Bureau

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Credit: Rick McKay/Cox Washington Bureau

“We want to finish what she started, breaking down the stigma,” Alexander said about the mental health program. “We wanted to make it clear that this is the legacy that we are going to carry forth.”

Dementia, according to the Alzheimer’s Association, is not a single disease, but rather an overall term that covers a wide range of specific medical conditions, including Alzheimer’s disease, caused by abnormal brain changes.

These changes often trigger a decline in thinking skills that are severe enough to impair daily life and independent functioning, while also affecting behavior, feelings and relationships.

The Centers for Disease Control and Prevention estimated that in 2014, there were at least 5 million Americans over the age of 65 who had dementia. That number is expected to skyrocket to about 14 million by 2060.

Former President Jimmy Carter and former First Lady Rosalynn Carter make their way through Plains for the annual Peanut Festival.

Credit: Jill Stuckey

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Credit: Jill Stuckey

Jimmy Carter has had his own medical issues in recent years. In 2015, he survived a melanoma diagnosis that later spread to his brain. The discovery followed the removal of a lesion on his liver that took about 10% of the organ. He also suffered several falls in 2019, including one requiring 14 stitches, and other health scares that have required hospitalization.

Last July, the Carters celebrated their 76th wedding anniversary, extending their record as the longest-married presidential couple in U.S. history, followed by former president George H.W. Bush and Barbara Bush, who were married for 73 years and 102 days until Barbara’s 2018 death.

The Carters married on July 7, 1946, in a tiny Methodist church in Plains. He was a 21-year-old U.S. Naval Academy graduate. She was the 18-year-old salutatorian of Plains High School who had fallen in love with a photograph of the future president that she had seen hanging on the bedroom wall of her friend Ruth, Carter’s sister.

Rosalynn Carter was only 12 years old when she was charged with helping to care for her father when he fell terminally ill with leukemia. In 1987, she founded the Rosalynn Carter Institute for Caregivers to help those who are helping others.

Researchers at the institute, which is housed at Georgia Southwestern State University in Americus, have been 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.

Dr. Jennifer Olsen, the chief executive of the institute, commended the family’s courage in sharing major health updates for both Rosalynn and Jimmy Carter this year.

Olsen invoked Rosalynn’s quote about four kinds of people found in the world: “Those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Since founding the institute, Rosalynn Carter herself has penned numerous open letters to sitting presidents, governors and congressional leaders urging them to make policy decisions that benefit caregivers. When Rosalynn hired Olsen to run her institute in 2018, the former first lady’s vision guided the organization as it grew by leaps and bounds, extending its reach nationwide.

“Mrs. Carter was integral in setting us on the path we’re on now,” Olsen said.

Alexander of the Carter Center said that the family would not be commenting further on the Carters’ health conditions as they both spend their days in Plains.

“The two of them are where they want to be — in Plains,” Alexander said. “Surrounded by family, aging gracefully and teaching us the lessons of how to do that — from hospice to dementia. That is part of aging.”

--Reporter Henri Hollis contributed to this story.