By Dr. Jennifer Olsen, CEO, Rosalynn Carter Institute for Caregivers
Former First Lady Rosalynn Carter’s caregiving journey began early in life, when she helped care for her father when he was diagnosed with cancer. Following his passing when she was 13, and the passing of her grandmother soon after, Mrs. Carter’s grandfather moved into the family home to receive care from her mother.
These formative experiences would shape her future policy and advocacy work as a trailblazer for caregivers everywhere.
Many Americans can see their own caregiving journeys reflected in the life of the late Mrs. Carter. Currently, 53 million Americans serve as caregivers to someone who is aging, ill, or living with a disability. Providing care can lead to stress on a person’s physical, mental, and financial well-being — often causing major life disruptions, with a third of working caregivers reporting having to leave a job because of their care responsibilities.
The Rosalynn Carter Institute for Caregivers
Mrs. Carter’s advocacy on behalf of caregivers led her to establish the Rosalynn Carter Institute for Caregivers (RCI) 36 years ago, at a time when the term “caregiver” was not largely used. Today, RCI is a leading advocate promoting caregiver health and strength. As a Healthy People 2030 Champion, RCI takes action to transform the future of caregiving by building cross-sector partnerships, leading research projects and strategic initiatives, developing and implementing evidence-based programs, and advocating for systems-level policy change at the state and federal level.
One common finding in RCI’s programmatic work and research is that the needs and experiences of caregivers are frequently overlooked. Caregivers are an afterthought. The person needing direct care is often the center of attention in our health care system, leaving the person providing the care in the background, navigating complex systems alone and unsupported.
Because of this, RCI is introducing a new approach to put the needs of those who are providing care at the center. Along with our research partners at Duke University in the Department of Population Health Sciences, we have organized the complexity and variation of care experiences into 9 profiles of caregiving. Understanding the experiences of the care journey will help to strengthen the efficacy of supports. By working across sectors, we can create a more supportive and empowered caregiver experience by expanding and targeting resources, implementing more holistic and responsive policies, and inspiring systems-level transformation.
Ahead of her time as always, Mrs. Carter never used a care recipient’s diagnosis to describe a caregiver; she first described what the caregiver was experiencing. These profiles are a path to helping us all see what she always recognized: caregivers are the invisible frontline who are ignored at great risk to our health care system, our economy, and our communities.
Profiles in Caring
Behind this project to develop Profiles in Caring is the idea that caregivers’ needs and experiences must be centered more in conversations throughout a care journey. While recognizing that all caregivers have unique needs and experiences, we found that there are phases of caregiving to which many caregivers can relate.
Using these phases, and the stressors and the goals associated with them, we were able to develop 9 unique profiles to help locate caregivers on the continuum of their care journey:
- Caregivers managing a crisis
- Caregivers adjusting to a new diagnosis
- Caregivers managing active treatment with the care recipient
- Caregivers working on recovery alongside care recipient
- Caregivers managing a static conditions alongside care recipient
- Caregivers managing a decline in illness/condition alongside care recipient
- Caregivers managing a setting change alongside care recipient
- Caregivers caring for someone at the end of their life
- Caregivers in the post-caregiving phase
- Caregivers transitioning from one phase of caregiving to another
These proposed Profiles in Caring are designed to serve as mile markers around which unique resources, needs, goals, and policies concerning caregivers can be organized. Once fully defined, these profiles could aid:
- Health practitioners to better understand and support caregivers and their experiences
- Organizations serving caregivers to inform their programs and services
- Policymakers at the federal and state levels to strengthen policies, such as the 2022 National Strategy to Support Family Caregivers
- Employers to design and offer benefits that align with specific stages
As the idea of a federal Office for Caregiver Health continues to take shape, these profiles could serve as an initial foundation to grow and centralize resources.
Why It Matters
As Mrs. Carter often reminded us, there are 4 kinds of people: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Everyone is touched in some way by a care experience, which means our systems of support need to be stronger to help these invisible — yet critical — people who are the backbone of our health care system.
The stress of caregiving can lead to myriad negative health outcomes for the caregiver. The stress and difficulties of caregiving also impact their professional and personal lives. And when a caregiver is not at their best, they can’t provide the best possible care.
Caregivers should be able to find support without neglecting their own needs or putting their lives on hold. If successful, these Profiles in Caring will provide a guide to change the system for the benefit of family caregivers based on their needs throughout their care journey.
What Comes Next
RCI and Duke will be working over the coming months to refine this model and test the implementation of the profiles in different sectors. We are eager to drive systematic change for caregivers in this country.
We know that public health practitioners, health care professionals, and policymakers will have valuable input and feedback to further strengthen and implement this model. We encourage you to email info@rosalynncarter.org to learn more about these profiles, our research, and the work of RCI.
Together, we can make a difference in the lives of caregivers across the country. And together, we can honor Mrs. Carter’s legacy and the work she left for us to continue.
