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Addressing America’s invisible, billion-dollar problem

The University of Utah’s Family Caregiving Collaborative (FCC) proudly announces its recent participation in the inaugural Caregiver Nation Summit held in Washington D.C. on Oct. 24-25. The U’s FCC was among the select few invited to this historic event, underscoring the exceptional work being carried out in Utah. FCC representatives participated with six other states to develop advocacy and coalition-building strategies to better serve family caregivers at the state level. They then met with more than 70 congressional offices to drive action on the National Strategy to Support Family Caregivers.

The Utah team was led by professor Rebecca Utz, a caregiving researcher in the College of Social and Behavioral Science; Rob Ence, executive director of the Utah Commission on Aging; Nancy Allen, College of Nursing researcher for persons with diabetes and their care partners; Mary Urie from the Developmental Disabilities Council; and Jen Morgan from the Institute for Disability Research, Policy, and Practice at Utah State University.

For the past four years, the FCC, sponsored by the U’s College of Nursing, has made significant strides in supporting and advocating for the unsung heroes of health care—the family caregivers. With an interdisciplinary approach leveraging the expertise of more than 70 faculty, researchers and scholars across campus, the FCC has spearheaded initiatives to empower and provide resources for caregivers, as they tirelessly support their loved ones. The FCC has also played an instrumental role in convening stakeholders from across the state to identify, prioritize and strategize about how to recognize and support family caregivers in Utah. This work highlights the innovative, research-community partnerships that have positioned Utah at the forefront of national conversations.

Unseen heroes valued at billions

A groups stands on the steps in front of the White House.

PHOTO CREDIT: University of Utah Family Caregiving Collaborative

The inaugural, historic Caregiver Nation Summit addresses an invisible problem valued at billions of dollars.

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Family caregivers, often hidden in plain sight, form a vital backbone of health care in America. It is estimated that 53 million American—about 1 in 5 adults—are currently providing care and support to an older adult or child with special needs. These mostly unpaid contributions are valued at a staggering $470 billion on a national scale, with $5.1 billion attributed to Utah alone.

“Family caregivers, who are providing the majority of long-term care in the United States, often experience challenges to their own health, well-being and financial security while providing support to those who need it.  It is for this reason,” said Utz, senior associate for the FCC. “That it is becoming increasingly recognized that ‘caring for the caregiver’ is essential to both the public health and economic well-being of America.”

The inaugural, historic Caregiver Nation Summit addresses an invisible problem valued at billions of dollars.

The importance of family caregiving has recently gained significant momentum at both the local and national levels. The introduction of the National Strategy on Family Caregiving and the White House executive order on caregiving have set the stage for heightened awareness and support. Delivered to Congress in fall 2022, the RAISE Act national strategy outlines nearly 350 actions the federal government has committed to take to support family caregivers, along with more than 150 actions that can be adopted at other levels of government and across the private sector to build a comprehensive system to support family caregivers.

Three pillars of transformation

The Family Caregiving Collaborative, a College of Nursing-led interdisciplinary initiative employs a multi-faceted approach to address the myriad challenges faced by family caregivers:


The collaborative is dedicated to empowering the future health care workforce by emphasizing the critical role of family caregivers. By educating health care professionals on the significance of involving family caregivers in the care process, the FCC is helping shape health care systems to be more inclusive and supportive of families.

Research and practice

The FCC is actively involved in testing new approaches to support the health and well-being of both patients and caregivers. By exploring innovative strategies, they aim to alleviate the burdens faced by family caregivers, ensuring they can continue their vital role without sacrificing their well-being.


The collaborative collaborates with community stakeholders and policymakers to advocate for better support systems for family caregivers. By providing evidence-based information/data, they actively work to enhance the lives of caregivers and facilitate the development of crucial resources.

The ultimate mission of the Family Caregiving Collaborative is to create a future where caregivers of all ages, races, ethnicities and genders are not only seen and heard but also understood, valued, connected and supported. By focusing on education, research and outreach, the FCC is paving the way for a health care system that acknowledges the invaluable contributions of family caregivers.

“These dedicated individuals often find themselves providing care at the expense of their health,” notes FCC Director, Lee Ellington, Ph.D. “The FCC seeks to address this imbalance, focusing on the advancement of person- and family-centered care, where patients and caregivers together define their “family” and collaborate in decision-making.”

A brighter and more inclusive future

Gov. Spencer Cox declared November as Family Caregiver Month highlighting the important role of Utahns serving as caregivers. Additionally, the FCC is hosting a Caregiving Forum focused on mental health in early December.

“Throughout our lives, all of us will likely be a care partner or need a care partner, or perhaps both,” said Ence of the Utah Commission on Aging. “It is so exciting to see increasing public awareness, research and policy support for family caregiving. This is an issue that affects us all, no matter our age, race, class or sex.”

The U’s Family Caregiving Collaborative is not just supporting caregivers; it is championing a fundamental shift in the way we view and support caregiving, setting the stage for a brighter and more inclusive future for all.

Visit the University of Utah’s Family Caregiving Collaborative for more information.