Profiles in Caregiving

Over 100 million Americans currently serve as family caregivers to someone who is experiencing health impacts of illness, disability, or getting older. It is a nearly universal experience. In the words of Former First Lady Rosalynn Carter, “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.”

Despite this, the caregiver experience is often overgeneralized. 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 journey. For example, two different caregivers of people living with Alzheimer’s may have vastly different needs depending on other factors that extend beyond their care recipient’s diagnosis – including how long they have been caring for their care recipient, whether they are the primary caregiver, or the nature of the caregiving tasks. Other caregivers are overlooked simply because the person they care for has not been diagnosed with a specific disease or condition – a situation that disproportionately affects the individuals who struggle with access and availability of health services because they do not have the time or resources to pursue a diagnosis.

It’s time to change the conversation, and change the system.

RCI is leading a paradigm shift to enhance the health and wellbeing of both caregivers and the care recipients. By conceptualizing 10 caregiver-centric profiles, we have organized the variability and complexity of care for someone who is aging, ill, or disabled so that there is a more informed place to start when supporting caregivers.

© 2024 Rosalynn Carter Institute for Caregivers, Inc. & Duke University

A NEW FRAMEWORK

To meet the support needs of caregivers, RCI launched an initiative to develop the profiles framework using the diverse experiences of real caregivers. Working with our academic partners at Duke University, we reviewed more than 10,000 research papers, convened an expert stakeholder panel, and conducted a series of robust caregiver focus groups to advise on profile development. We identified the primary components that were shaping or influencing their caregiver experience: Phase of care, the goals of the caregiver and care recipient, stressors or sources of strain, and the individual factors such as race, geographic location, and family composition. We developed ten caregiver profiles:

  • Adjusting to a new diagnosis
  • Coping with a crisis
  • Managing active treatment
  • Working on recovery or independence
  • Managing a static illness or condition
  • Managing the decline of an illness or condition
  • Managing a system or care setting change
  • Caring for someone at the end of their life
  • Transitioning from one phase to another
  • After caregiving (e.g., bereavement)

    Caregiver experiences are not homogenous, and this lack of understanding across different types of caregiving has complicated and delayed the development of effective supports for caregivers. While more work is needed to disseminate, operationalize, and pilot how this new framework can be used in practice, Profiles in Caregiving represents a significant step toward ensuring that individual caregivers are seen and centered in services, programs, and policies.

JOIN US

Learn more about Profiles in Caregiving and how we can partner by reaching out to Karen Kavanaugh (karen.kavanaugh@rosalynncarter.org)