Thirty years is a long time in the history of caregiving as an issue in our country. The world was a very different place then. We used push-button phones, not cell phones, and had big word processors, not personal computers. There were social clubs, not social media, and people took care of each other because of a sense of familial responsibility. You didn’t hear much about “caregivers,” not because they didn’t exist but because what they were doing was quite common, and it was expected.
Conversations about caregiving — when they took place — happened quietly, behind closed doors, where no one could feel shame in talking about how hard it was. The Family and Medical Leave Act had been introduced, but it did not include elder care, and it was languishing in Congress.
This was also the time when Jimmy and I had come home from the White House. Soon afterwards, I was approached by the president of our local community college, Georgia Southwestern (GSW, now Georgia Southwestern State University), who informed me that the college had a small endowment for a mental health program and asked if I would work with them to develop a program on the campus.
I had already established a good mental health program at The Carter Center and didn’t want to duplicate it. Over years of working in the mental health field I had seen so many families struggle with caring for a loved one with a mental illness, so we thought we might begin a program to help people in that situation.
We held a meeting at the college and invited everyone we knew who was caring for someone with a mental illness. We brought in a speaker who was an expert on burnout. Word got around in our small town, and we were surprised when others caring for frail, elderly or disabled loved ones wanted to come. It was the most emotional meeting I have ever attended. People were crying, saying, “This is the first time I have ever been able to talk with others who know what I am going through.” We knew we had stumbled on a vital need, and the Rosalynn Carter Institute was formed.
In the 30 years since RCI was founded, we have helped thousands of people make that connection. While many organizations focus on those who are ill, aging, injured, or disabled, RCI’s programs provide support and training to those who provide care. This strategy not only helps the caregiver but often has a huge impact on the entire family. Studies show that the healthier the caregiver is, the better the quality of care provided.
Since RCI’s inception, the institute has been a catalyst for change, helping raise the field of caregiving to international recognition. National advocacy organizations such as the Caregiver Action Network and Family Caregiver Alliance have strengthened. Major organizations such as AARP, Easterseals, Blue Star Families, and the American Cancer Society have incorporated caregiving, acknowledging the critical role caregivers play in supporting aging, ill, and disabled people and injured veterans.
There are now an estimated 65 million family caregivers in the United States. They provide care for parents, relatives, spouses, and children, saving the country an estimated $470 billion annually in health care costs. Family caregivers attend to a multitude of tasks, ranging from changing wound dressings to scheduling appointments and disputing insurance claim decisions. While economists may put a dollar figure to their contribution, the care they provide is invaluable.
The need for a more robust and structured field of study is only increasing as the population ages. The Baby Boom generation ranges in age from 55 years old to just over 70 — still young by most definitions, certainly by mine! But as the nation’s largest generation grows older, the need for caregivers will only become more pronounced.
The past 30 years have been foundational in the field of caregiving. Collaboratively, we have reduced the stigma of asking for help; we have raised visibility among employers and the federal government; we have developed evidence-based support programs and systems for caregivers; and we have normalized caregiving. What will the next 30 years bring for the field? I hope to see a reduction of the burden on caregivers and an increase in recognition of the care they provide. I anticipate that technology will continue to enable more flexible working conditions, enabling caregivers to more easily balance that role with their professional lives. As I celebrate my 90th birthday this year, I look forward to seeing more advances in my lifetime.
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