Honoring Family Caregivers

One in five Americans is a family caregiver. As both unpaid workers and unseen patients, these valuable members of society deserve to be seen by us and partner with us for the health and well-being of both them and their family members.

“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 a caregiver.”

Those words, attributed to former First Lady Rosalyn Carter, illustrate the value of family caregivers. The COVID-19 pandemic highlights the nation’s increasing dependence on this unpaid, yet vital, workforce.

Celebrated every November, National Family Caregivers Month is a tribute to recognize and honor family caregivers across the country. Yet, despite their vital role in the lives of older adults, family caregivers are often unrecognized in the health care system and their needs are left unaddressed.

At the Betty Irene Moore School of Nursing at UC Davis, through our Family Caregiving Institute, we seek to support the more than 40 million individuals — that’s one in five people — who provide care to aging family members or friends in the U.S. and do so without pay. Our team of researchers and clinicians develop systems to support them. Our educators innovate in instruction to equip current and future providers to work with caregivers.

Since January, Terri Harvath, institute director, has consulted close to 200 family caregivers in the new UC Davis Health Healthy Aging Clinic. One caregiver described the experience as a life-saver, a sentiment certainly shared by those who now benefit from this unique service.

While family caregivers focus on the aging relative or friend, it is incumbent upon us as health care providers to recognize the toll that tending to someone who is frail or ill takes on caregivers. The demands are, of course, physical — mobility assistance, bathing and dressing, shopping and transportation, constant medication management — all while juggling their own jobs and families. But caregiving also overwhelms family caregivers mentally and emotionally. And it intensified during the pandemic.

By listening to caregivers, partnering with them and providing resources, our health system is fulfilling our commitment to promote healthy aging through an integrated approach across the lifespan and all care settings. Last month, the UC Davis Medical Center Emergency Department took the first step toward elevating our care for older adults when it was designated an Age-Friendly Health System Committed to Care Excellence.

Many caregiving programs are provided by service agencies, which lack the funding and expertise to conduct evidence-based research that determines the effectiveness of their interventions. The institute’s program and policy evaluation unit, led by Professor Heather M. Young and Associate Dean for Research Janice Bell, currently evaluates the California Caregiver Resource Centers (CCRC) expansion project to assess the design and implementation of a $30 million contract from the state of California. The goal is to improve and increase access to resources through implementation of a standardized online assessment tool and suite of services. A new grant from the Archstone Foundation will enable our team to collaborate with the Family Caregiver Alliance do a deeper dive into understanding the needs of family caregivers in high intensity, complex care situations using data from the CCRC technology application, CareNav^TM. 

For the majority of family caregivers, the role they play is one of love. That aspect of the caregiver role is examined in the new documentary, “Caregiver: A Love Story”. Next week, Drs. Bell and Harvath, along with Jessica Zitter, a critical and palliative care specialist and creator of the documentary, host a virtual screening and panel discussion.

This month offers an important opportunity to both honor unpaid care providers in our midst and to commit to seeing them, as perhaps, unseen patients who need our perspectives and deserve our attention. When we do, our interventions have the potential to increase the caregivers’ competence and confidence, reduce their stress and distress, and improve the care they can provide to that family member or friend who is depending on them.