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Rosalynn Carter leads by example with dementia diagnosis announcement

By reducing stigma and starting an important conversation, it bookends her decades of work on mental health and reminds us there is meaningful life after diagnosis.

ATLANTA — It takes a special person to tackle an issue shrouded in shame and stigma, but 50 years ago, Rosalynn Carter brought mental health out of the shadows and into boardrooms, government chambers and kitchen tables.

Even the announcement that Mrs. Carter has been diagnosed with dementia marks a meaningful step in the former first lady’s legacy. By reducing stigma and starting an important conversation, it bookends her decades of work on mental health.

Rosalynn Carter Institute for Caregivers CEO Dr. Jennifer Olsen has witnessed this work firsthand, noting “I think that’s what’s so incredible about Mrs. Carter’s work. Both mental illness and caregiving were issues that were rarely talked about.".

On Tuesday, the Carter Center released the news with a statement that emphasized Mrs. Carter is “living happily at home with her husband, enjoying spring in Plains, and visits with loved one.”

That alone is an important point. In the statement, Mrs. Carter reminds people one can still live a meaningful life after a dementia diagnosis.

At 95, she continues to teach people how to age well and with dignity, how to have difficult conversations, and how to ask for help.

There is an understandable sadness at the news. But also, there is pride.

Mrs. Carter has been fighting for people living with dementia and their caregivers, for more than 50 years.

“It’s the greatest honor of my life to be able to work for an incredible 95-year-old woman,” Dr. Olsen said. “She gently nudges you toward making big things happen.”

Facing her own dementia diagnosis, the former first lady leads by example, pushing a hard conversation forward once again.

“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,” Dr. Olsen added.

Many of the services and legislation of present day are available because of Mrs. Carter’s relentless fight. She co-founded the Carter Center which has its own mental health branch.

There, Paige Alexander continues her work as the center's CEO.

“This is not an end-of-life moment for people. It is an opportunity for people to recognize that there is another stage,” she said of dementia. 

Mrs. Carter began advocating for mental health when her husband was running for Governor of Georgia. Through her many years of work, Mrs. Carter testified before the Senate, worked on the Georgia Mental Health Parity Act, and created the Rosalynn Carter Institute for Caregivers on the campus of Georgia Southwestern where Mrs. Carter went to school.

“She put her name next to this population in a way that creates visibility that otherwise wouldn’t exist,” Dr. Olsen added.

Alexander noted, “[The] announcement is just part of a process of hoping that families around the dinner table and around doctor’s offices can have conversations about these issues.”

As news about Mrs. Carter’s diagnosis sinks in, advocates know now is when the work begins.

“The window has opened, and our job is to seize this moment and do something about it,” Dr. Olsen said.

It’s just as Mrs. Carter would want it.

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