Commentary: Acknowledge essential family caregivers during the holidays

Over 450,000 Utahns are family caregivers, defined as those providing unpaid care and support to our most vulnerable populations – those who are aging, chronically ill or have physical or intellectual disability, allowing them to remain in their homes and in our communities.

Caregivers are most often the spouses, parents and adult children of those requiring assistance. Siblings, cousins, friends and neighbors also commonly serve as caregivers. They may not identify as caregivers, as they are “just doing what families do.”

Family caregivers assist with grocery shopping, meal preparation, arranging for and accompanying the individual to medical appointments, assisting with eating, bathing and dressing, managing household finances and advocating for benefits. Family caregivers are increasingly responsible for activities previously performed by medical professionals, including managing medications, giving injections, and operating medical equipment.

A recent report from the University of Utah Family Caregiving Collaborative and the Kem C. Gardner Policy Institute estimates that one in four adult women and one in six adult men in Utah are caregivers. Nearly one in three Utahns between the ages of 55-64 are current caregivers. About 35,000 of Utah’s caregivers reported providing more than 40 hours of caregiving per week and have been doing so for more than 60 months.

Family caregivers save the state of Utah significant money. Utah caregivers provide direct care and services valued at nearly $5 billion annually, with additional savings associated with reduced or delayed institutionalization, not using costly at-home health care services and lower rates of emergency room use.

The economic value of family caregiving is undeniable, but being a caregiver is not costless. Given the long hours and challenging work, caregivers commonly experience a decline in their financial, physical, social and emotional health. Financial consequences include lost wages, reduced social security and retirement benefits, and out-of-pocket care expenses. The financial costs may have a lifetime impact.

Caregivers often put their own needs below those of the person they are caring for and readily admit that they have put off taking care of their own health or well-being. Feelings of isolation, stress, burden, and lack of appreciation are also common among caregivers.

The holidays can be a particularly stressful time for caregivers. Daily routines may be disrupted. Additional planning may be necessary to join in celebrations. Travel and receiving visitors may add to the stress.

As the holidays bring together friends and families (either in-person or at-a-distance), we all have the unique opportunity to recognize and let caregivers know how much we appreciate what they do and to offer them our support.

Consider providing a family caregiver with respite (a break) and encourage them to take even a few moments of self-care for themselves. Seek better communication and connection among your family and friends, especially those who may be able to support family caregivers in the challenging work they are doing every day. Conversations to plan and prepare for future caregiving needs can be a gift to the whole family. During a lifetime, it is almost certain that everyone will either provide or require care (or both).

Because family caregivers are such an essential, yet often overlooked, part of the care economy in Utah, a task force is taking shape to create a “State Plan for Family Caregivers” which will assess and prioritize the needs of family caregivers in Utah. A recent state-wide survey of stakeholders suggests that Utahns are united in the goal of supporting family caregivers and the promotion of policies that protect the financial well-being of caregivers, expand services, and supports to caregivers that enable family members to stay in their homes, and increase awareness and availability of caregiver support services throughout Utah.

Additional resources for caregivers can be found at the Utah Commission on Aging. Additional information about the reports referenced here and updates about statewide efforts to support family caregivers are available through the University of Utah Family Caregiving Collaborative.

This holiday season don’t forget to recognize and support the family caregivers in your life.

Lee Ellington, Ph.D., is director of the Family Caregiving Collaborative and a professor in the College of Nursing, University of Utah.

Rob Ence, MBA, is executive director of the Utah Commission on Aging.

Debra L. Scammon, Ph.D., is senior faculty associate at the Family Caregiving Collaborative and a professor at the David Eccles School of Business, University of Utah.

Rebecca L. Utz, Ph.D., is senior faculty associate at the Family Caregiving Collaborative and a professor at the College of Social and Behavioral Science, University of Utah.