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Media Contact: Debra McCarron | [dmccarron@healthsperien.com] | 410-371-8948
C-TAC and NAC Release New Paper: Not Just Visitors—Integrating Family Caregivers in Care Delivery and Design
Funded by the Elea Foundation
Washington, DC — September 16 – The Coalition to Transform Advanced Care (C-TAC) and the National Alliance for Caregiving (NAC), with support from the Elea Institute, today announced the release of Not Just Visitors: Integrating Family Caregivers in Care Delivery and Design, a compelling paper that underscores the essential role of family caregivers in supporting loved ones with serious illness and calls for urgent action to integrate caregivers into health care systems and policy.
Family caregivers are indispensable yet often unrecognized. Nearly one in four Americans is a caregiver, providing complex, hands-on support for loved ones—often without training, pay, or recognition. As the U.S. population ages and more people live longer with serious illness, the demand for caregiving is rapidly outpacing the available supply.
“Family caregivers are not just visitors—they are core members of the care team. This paper highlights practical solutions to ensure caregivers are supported, recognized, and integrated into health care delivery and policy at every level,” said Jon Broyles, CEO of C-TAC.
The stakes could not be higher. Family caregiving is valued at more than $600 billion annually, but caregivers face significant financial strain, health risks, and emotional stress. Without stronger systems of support, the sustainability of caregiving—and, by extension, the health care system itself—is at risk.
Policy momentum is growing. Recent bipartisan actions, including the Alleviating Barriers for Caregivers Act, the National Strategy to Support Family Caregivers, and the Centers for Medicare & Medicaid Services’ (CMS) GUIDE model, demonstrate increasing recognition of caregivers’ critical role.
“Family caregivers are essential healthcare partners, not just visitors to the system,” states Jason Resendez, CEO & President at NAC. “Yet they’re often excluded from key conversations, receive no training, and face enormous emotional and financial challenges with little support. We need intentional innovation in how we design care delivery—creating systems that fully integrate, support, and recognize family caregivers as the critical care team members they are.”
Not Just Visitors builds on this momentum by outlining concrete, actionable strategies for integrating caregiver supports into payment and care delivery models—such as caregiver assessments, training, reimbursement mechanisms, and respite care.
This paper arrives at a pivotal moment when federal and state policymakers, health systems, and advocates are seeking scalable solutions to strengthen serious illness care. Not Just Visitors offers a roadmap to ensure that family caregivers are supported as essential partners in care, helping to close the widening gap between the growing need for care and the resources available to provide it.
The full paper is available here.
About C-TAC
The Coalition to Transform Advanced Care (C-TAC) is a national, bipartisan alliance of over 200 organizations dedicated to improving care for people with serious illness and their families. C-TAC works across health systems, policy, and communities to ensure that individuals receive person-centered, equitable care aligned with their values and needs. The organization advances this mission through policy advocacy, delivery system reform, public engagement, and cross-sector collaboration. C-TAC also leads initiatives to integrate family caregivers into care models, promote culturally appropriate care, and support innovation that improves quality of life for those facing advanced illness.
About NAC
The National Alliance for Caregiving (NAC) is a catalyst for change, transforming how the United States recognizes, supports, and values its more than 63 million family caregivers providing complex care for older adults, people with a serious illness, or a disability. Through our nationally recognized caregiving research and advocacy, we drive policy, system, and culture change to elevate family caregivers as a national priority. NAC fosters partnerships across aging, disability, healthcare, philanthropy, and the private sector with the goal of making family caregiving more sustainable, equitable, and dignified.
About the Elea Institute
The Elea Institute, founded in 2022, builds on more than four decades of hospice and palliative care history in Chicago, beginning with Horizon Hospice and Midwest Palliative & Hospice CareCenter and later JourneyCare. Established following the transition of JourneyCare’s clinical services to Addus HomeCare, the Institute carries forward its predecessor organizations’ mission to ensure access to high-quality hospice and palliative care. Today, Elea advances this legacy through grants, projects, and educational resources that expand services, enhance access for communities, and support patients and caregivers.
