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Shifting Caregivers from the Margins to the Middle: Power in Numbers

Join CEO Jennifer Olsen, DrPH, as she discusses the Rosalynn Carter Institute for Caregivers’ (RCI) vision and strategies designed to make caregivers more central in our culture, in our policies, and in our workplaces.
MAY 17, 2023

by Claire Regan, DNP, CRNP

At age 12, Rosalynn Carter found herself caring for her chronically ill father, and after his passing, helping her mother care for her younger siblings. Her personal journey led her to champion the needs of caregivers as essential to the health of our population and the success of the health care system. The former First Lady’s story foreshadows the experience of 53 million Americans who currently serve as caregivers, a group often struggling to manage this role in addition to households, jobs, finances, and their own health. Despite the critical role of caregivers within our community, they often remain on the margin of conversations rather than being the focus.

The Rosalynn Carter Institute for Caregivers (RCI), founded in 1987, is working to change how we see and support caregivers. Jennifer Olsen, DrPH, the Chief Executive Officer, joined the Caregiving Now series to discuss the institute’s vision and strategies designed to make caregivers more central in our culture, in our policies, and in our workplaces.

Toward a New Typology of Caregiving

Calling the current culture surrounding caregivers and caregiving deficient and outdated, Olsen highlighted the need for a new typology of caregiving. Societal structures rely heavily on the diagnosis of a patient or loved one to guide the allocation of resources and supports. Caregivers are often an afterthought, as in “we support individuals with dementia and their caregivers.” By developing and distributing resources for caregivers based on someone else’s diagnosis, Olsen said, we are not addressing caregiver concerns and leaving out those whose loved one may not have a diagnosis. For example, a caregiver who has navigated caring for multiple family members with dementia may not need a crash course in the disease, but information about financial resources may be crucial for their success.

RCI is developing and testing a new typology of caregiving that would change this one-size-fits-all approach based on diagnosis to one that can better match the individual needs of caregivers to relevant resources. Olsen emphasized the need to think of caregivers not as a separate group but as a central group.

Culture around caregiving extends into personal relationships as well. Olsen recognized the importance of social relationships in the caregiving journey and the support from friends, colleagues, and the community. But all too often, Olsen said, people may not know how to respond or offer support. Should I invite them to my event, or will they be too busy? Should I set up a meal train, or would that be inappropriate? A new typology could offer a roadmap or a playbook to help people be more intentional about the types of support they are offering.

Public Policy Advocacy

On a broader scale, RCI promotes public policies that better align resources to meet the needs of caregivers. First, they have developed a “4kinds network” of current and former caregivers who share their stories with policymakers. This initiative strives to bridge the gap between lived experiences of caregivers and the perspectives held by politicians. Through speaking at legislative hearings, conducting media interviews, and developing documentaries, caregivers’ stories are being heard at federal, state, and local levels. The 4kinds network is one way in which current and former caregivers can leverage their individual and cumulative voices to influence policy as it is being developed.

Second, RCI advocates for federal coordination of resources through a new Office of Caregiver Health within the Department of Health and Human Services. Olsen noted that this structural approach can overcome silos of agencies and programs that are often geared to specific diagnoses or payers. The new office would provide leadership around effective caregiver supports and ensure that caregivers are represented in health policy and programs, regulations, and budget negotiations across federal agencies.

Supporting Caregivers at Work

Some of the most novel work at RCI involves collaborating with employers to improve caregiver support in the workplace. Through this work, RCI strives to change the language around benefits and services, provide training for management personnel, and identify interventions for recognized gaps in resources. Olsen provided a few examples of how this collaboration can help employers improve their present benefits and develop new ones. For example, offering employees a ‘care credit’ that can offset the cost of paid caregiving seems like a generous offer, but if paid caregiving is not available within the geographical area or is not available during work hours, employees will not benefit from this resource. Another example are leave policies, which are often general and meant to cover many different reasons for leave. But the context of caregiving can drastically alter the needs of the caregiver. More flexible leave policies could help employers target leave policies that distinguish the needs of employees caring for a child versus an adult, caring for someone who is ill versus disabled, or caring for an older adult who is cognitively intact versus one with dementia. Questions that Olsen and her team ask are ‘What is within employer control? What is the context that the employers are dealing with geographically? And how can we take advantage of for-profit and nonprofit resources?’

Olsen mentioned a collaboration in SE Michigan with a group of employers seeking to support employees who have jobs that are not flexible in time or place. These caregiver-employees cannot benefit from strategies such as remote work. Instead, this group is exploring different ways to schedule shift work and pool resources so that their employees can fulfill their caregiving responsibilities and stay in the workforce.

In Mrs. Carter’s own words, “…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.” Caregiving is something that we will all experience in our lifetime and should be a cause we are all advocating for. Olsen and RCI are at the forefront of the fight for change, and the power of 53 million voices will be heard.


Caregiving NOW! with Jennifer Olsen CEO, Rosalyn Carter Institute for Caregivers