Commentary: Family caregivers are the invisible health care workers

(Rick Egan | The Salt Lake Tribune) A sign in Sugarhouse, Tuesday April 7, 2020

Frontline health care workers treating patients with COVID-19 are heroes. Additionally, the 340,000 family members, neighbors and friends providing care to Utahns with chronic conditions and disabilities in their homes are also heroes. They are the unpaid family caregivers, an invisible health care workforce that deserves our thanks, especially now during the COVID-19 pandemic.

Family caregivers manage medications, administer routine medical and nursing tasks, assist with bathing and dressing, do household chores, prepare meals and oversee finances. They care for persons with cancer and dementia. They care for younger and older persons with disability or complex medical conditions, as well as provide rehabilitation after stroke, surgery, and injury. The average family caregiver provides about 25 hours of care weekly, with one in four providing more than 40 hours weekly.

The financial value of family caregivers surpasses the cost of care provided by our healthcare system. In Utah, the value of care provided by family caregivers is estimated at $4.2 billion annually, a number approximately twice as much as Utah collects in sales taxes annually.

In the time of COVID-19, family caregivers are critical to “flattening the curve in Utah. They are helping keep medically-vulnerable patients out of the hospitals, emergency rooms, and health clinics, where medical staff must prioritize the control of COVID-19. For those facing the challenge of caring for someone with COVID-19 symptoms, they are monitoring symptoms, deciding whether to seek medical care, and managing quarantines and self-isolation in the home, without further taxing the health care system.

In light of Gov. Gary Herbert’s state-wide “Stay Safe-Stay Home” directive, family caregivers are providing more care than ever before. Because of physical distancing and the closing of non-essential services, they are likely doing it alone. Arrangements with other family members and friends, who may ordinarily provide support or breaks for the in-home caregiver, may no longer be possible in our current stay-at-home environment.

Formal service providers, like adult day centers and schools, are currently closed, reducing important forms of support for both patients and their caregivers. Finally, many health care providers are cancelling regularly scheduled elective appointments to reduce the spread of COVID-19 and to preserve medical personnel and equipment, leaving family caregivers without the support of medical professionals they have typically relied upon.

The uncertainty and social isolation associated with COVID-19 is making a hard job even harder. This likely results in increased risk of caregiver burnout, which not only jeopardizes the caregivers’ health, but also the health and well-being of the person they are caring for.

We take a moment to recognize family caregivers, the invisible health care workers in our community:

• Reach out. Take advantage of high-tech solutions like video-calling to personally connect with family or friends who are caregivers. A simple hand-written note may be meaningful. Let the caregiver know that you are aware of the hard work that they are doing.

• Offer to help. When you go to the grocery, pick-up needed supplies for a neighbor who is a caregiver. Find ways to engage the care-recipient on the phone or via video conference to give the caregiver a break.

If you are a caregiver,

• Plan ahead. Take a moment to create a plan for caregiving, should you become ill. It could be one of the best stress relievers for you, to know that your loved one will be cared for.

• Be easy on yourself. These are trying times and perfection is not the goal. Take self-care when and if you can, and don’t be too hard on yourself when you lose your patience.

Today, we celebrate you. The work you are doing is heroic.

left to right: Lee Ellington, Rebecca Utz, Debra Scammon

Lee Ellington, Ph.D., is the Robert S. and Beth M. Carter Professor in the College of Nursing and director of the Family Caregiving Initiative at the University of Utah.

Debra Scammon, Ph.D., is the Emma Eccles Jones Professor of Marketing in the David Eccles School of Business at the University of Utah.

Rebecca Utz, Ph.D., is an associate professor of sociology in the College of Social and Behavioral Sciences and co-director of the Consortium for Families & Health Research at the University of Utah.