Shifting the Paradigm:
Caregiving (Caregiver Profiles©)
There are 105 million caregivers in America. Their experiences are unique and diverse, and the stages of care they provide are distinct and complex. Navigating an initial diagnosis for an aging parent, is different from managing medication and skilled care for a disabled child, is different from end-of-life care for a spouse.
Yet, across policy, research, and programs for this invisible frontline of our healthcare system, the focus is overwhelmingly on the care recipient’s diagnosis—not the caregiver’s experience.
It is time to change the conversation. It’s time to change the system.
Understanding the Experiences of Caregivers
Creating a world where every family caregiver, caring for individuals who are aging, experiencing illness, or living with a disability, is seen, heard, and supported. Our health care system and policies typically categorize caregivers by the diagnosis of the care recipient, with little to no information on the stressors faced by caregivers themselves.
RCI’s grounding philosophy is to better support caregivers and provide more tailored, nuanced, and intentional support, understanding how the burden, intensity, and duration of caregiving shape the caregiver’s experience. Informed by a review of more than 10,000 research papers and a series of robust caregiver focus groups, and in partnership with Duke University, RCI has developed 10 core profiles of caregiving experiences.
Our Caregiver Profiles© organize the complexity of caregiving experiences and have the potential to influence how caregivers are recognized and supported, and how systems are transformed to include caregivers within “person-centered” care models.
The care recipient’s diagnosis often drives the availability and type of caregiving support. But what about an individual’s needs and preferences? If our goal is to support caregivers and mitigate the negative effects of caregiving, several factors must come into play, including the main stressors present, the phase of caregiving, the goals of caregiver and care recipient, and contextual factors, such as caregiver race, ethnicity, and geography.
What are Caregiver Profiles©?
Working with our academic partners at Duke University, RCI has proposed a paradigm shift that will improve the health and wellbeing of the caregiver and care recipient alike. Informed by a review of more than 10,000 research papers and a series of robust caregiver focus groups, we have developed 10 profiles of caregiving experiences. These profiles put the experience of the caregiver at the center—just as our founder, the late former First Lady Rosalynn Carter called on us to do—with the hope of providing more tailored, nuanced, and intentional support.
Why Does This Matter?
The care recipient’s diagnosis often drives the availability and type of caregiving support. But what about an individual’s needs and preferences?
If our goal is to support caregivers and mitigate the negative effects of caregiving, several factors must come into play, including the main stressors present, the phase of caregiving, the goals of caregiver and care recipient, and contextual factors, such as caregiver race, ethnicity, and geography.
Discover The Caregiver Profiles©
Coping with or managing a crisis
Adjusting to or learning to understand a new diagnosis for your care recipient
Managing active treatment alongside care recipient
Working on recovery and towards independence alongside care recipient
Managing a static illness or condition alongside care recipient
Managing a decline of an illness alongside care recipient
Managing a system or setting change alongside care recipient
Caring for someone at the end of their life
In the post-caregiving phase
Currently transitioning from one phase of caregiving to another
Learn more about The Caregiver Profiles© here
We can’t do this work without the support of caregiver champions like you.