AMERICUS, Ga.--(BUSINESS WIRE)--The Rosalynn Carter Institute for Caregivers (RCI) today announced the launch of the Profiles of Experiences of Caregiving© (Caregiver Profiles©), an innovative framework that leads within the caregiver field by reimagining and elevating family caregivers, so they are better seen, understood, and supported. Developed in partnership with Duke University through an extensive review of over 10,000 research papers and comprehensive caregiver focus groups, these profiles shift the focus from the care recipient’s diagnosis to the caregiver’s unique experience. This new approach aims to provide more tailored, holistic support to the over 105 million people in the United States who are actively engaged in family caregiving.
“Caregiving is a near-universal experience, yet the support available is often limited, fragmented, and determined solely by the diagnosis of the care recipient,” said Dr. Jennifer Olsen, Chief Executive Officer of the Rosalynn Carter Institute for Caregivers. “The Caregiver Profiles allow us to move beyond a one-size-fits-all approach of caregiving. By doing so, we can center the caregiver’s needs and build a responsive system of support that considers their physical, mental, and financial well-being throughout their journey.”
The Caregiver Profiles are the result of decades of research and collaboration with caregivers from diverse backgrounds and partnership with Duke University. The framework is designed to capture and reflect the dynamic nature of caregiving, where each profile represents a distinct segment of caregiving. Whether adjusting to a new diagnosis or providing end-of-life care, caregivers face a wide range of challenges and opportunities that cannot be addressed with traditional, diagnosis-driven models.
“Caregiving is complex and needs to be elevated above and beyond the unique needs of those in our care, because each phase of a family caregiver’s experience presents specific hurdles,” said Paurvi Bhatt, President and Chief Impact Officer of RCI. “I experienced this first-hand when my father was diagnosed with early-onset dementia, and then later diagnosed with diabetes. In the beginning, the support and information I needed was vastly different from what our family required later in our experience. The Caregiver Profiles ensure that the health and social system can focus on family caregivers so they can receive the right support at the right time, enabling greater support for their own health and well-being.”
The Caregiver Profiles provide a more nuanced lens through which to view the caregiving experience. At a high level, they include:
- Coping with or Managing a Crisis
- Adjusting to or Understanding a New Diagnosis
- Managing Active Treatment
- Working Toward Recovery and Independence
- Managing a Static Illness or Condition
- Managing a Decline in Health
- Managing a System or Setting Change
- Providing End-of-Life Care
- Navigating the Post-Caregiving Phase
- Transitioning Between Phases of Caregiving
This framework also supports RCI’s mission to create systems-level change that prioritizes caregivers’ experiences and needs. “Mrs. Carter believed deeply in the need to transform how we support family caregivers,” said Dr. Olsen. “This framework supports RCI’s mission to create systems-level change that prioritizes caregivers’ experiences and needs, building on Mrs. Carter’s legacy.”
RCI encourages healthcare providers, community-based organizations, employers, and policymakers to adopt the Caregiver Profiles as a tool to create more responsive support systems. By using these profiles, organizations can better tailor their programs and services to the specific needs and stages of caregiving. For healthcare providers, the profiles can inform more comprehensive care planning and coordination. For employers, they offer a framework to understand and accommodate the unique needs of caregiver employees. Community organizations can utilize the profiles to design services that match the distinct experiences and challenges caregivers face at different stages of care.
For more information on the Caregiver Profiles and RCI’s efforts to advocate for family caregivers, visit RCI’s website.
Profiles of Experiences of Caregiving©2024 Rosalynn Carter Institute for Caregivers, Inc. & Duke University (Caregiver Profiles©)
About the Rosalynn Carter Institute for Caregivers
The Rosalynn Carter Institute for Caregivers promotes the health, strength, and resilience of family caregivers across the United States by transforming systems to better support them. Founded in 1987 by former First Lady Rosalynn Carter, RCI is dedicated to making caregivers visible, valued, and supported through advocacy, innovative research, and evidence-based programs. RCI’s work centers on elevating the unique expertise of family caregivers, advocating for systemic change, and advancing long-term solutions that enhance the well-being of caregivers and their care recipients.
