Remembering the Life and Legacy of Rosalynn Carter

Former first Lady Rosalynn Carter
Credit: The Carter Center

The nation is in mourning after former First Lady Rosalynn Carter died at age 96 on Nov. 19, 2023. She is remembered as a passionate advocate for many causes that were once viewed as taboo, starting with her fight to decrease stigma around mental health issues and “brain diseases” such as dementia. Spurred in part by the 1979 testimony of Anne Bashkiroff, whose crusade to bring awareness to Alzheimer’s disease is chronicled in the book, “For Sasha With Love,” Carter eventually became a fierce advocate for family cargivers, particualrly those who were caring for loved one’s with Alzheimer’s disease. 

Mrs. Carter described in an interview with Next Avenue how the two became linked for her: “My work with caregiving grew out of my mental health work. 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.” In that same interview, Mrs. Carter went on to admit, “I didn’t realize I was a caregiver until I got involved in this work.” 

Once Mrs. Carter began reflecting on caregiving, she quickly realized how it had shaped her life, starting at age 12 when her father became terminally ill with leukemia. She was the oldest of four children and was crucial in helping her mother care for him before his death. She then also provided caregiving support to a elderly grandfather, various members of Jimmy Carter’s family who died of cancer, and her own mother later in life. Yet the importance of caregivers, and the toll that this can take on them, was given little attention until Mrs. Carter began to shine a light on it in the 1980s. Mrs. Carter described how in her early speeches about caring for the caregiver, “Audience members came up to me crying, saying that this was the first time someone understood what they were going through.” She noted that people often don’t identify as caregivers but instead just view their efforts as responsibility to their family members. Mrs. Carter recognized that in highlighting the role of caregivers rather than just labeling their work as family responsibilities, there was advocacy work to be done on a systemic level to offer support.

Mrs. Carter speaking at the Rosalynn Carter Institute for Caregivers (RCI)
Credit: The Rosalynn Carter Institute for Caregivers

In 1987, she founded the Rosalynn Carter Institute for Caregivers (RCI), the first of its kind in the United States. RCI advocates nationally for caregiver support, leads research projects, and offers direct training and support for caregivers through one-on-one coaching and other programs. She was particularly passionate about increasing support for caregivers of dementia patients, and her legacy came full circle in May 2023 when the Carter family announced that Mrs. Carter had dementia herself. 

We honor the legacy of Rosalynn Carter and the impact she has had on the millions of Americans caring for loved ones. Mrs. Carter famously said before the Senate Special Committee on Aging, “I like to say that 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.” Her wise words remind us that we will all give and receive care throughout the course of our lives.