20 million family caregivers perform complex nursing and medical tasks with little instruction according to a new report issued by AARP this week and co-authored by Betty Irene Moore School of Nursing at UC Davis Dean Emerita Heather M. Young.
According to the special report, Home Alone Revisited: Family Caregivers Providing Complex Care, roughly half of the estimated 40 million caregivers in the U.S. give injections, prepare special diets, manage tube feedings and handle medical equipment. In addition, 70 percent of these caregivers are dealing with the stress of managing pain relief in the midst of a national opioid crisis.
“As we worked on this, we always considered multiple stakeholders —the caregivers themselves, policy makers, researchers, educators, community agencies and health systems,” Young said. “There are implications in this report for all these stakeholders and it is a call to rethink the way we collaborate with families in delivering care for older adults.”
The School of Nursing is a founding member of the Home Alone Alliance℠, which includes AARP, United Hospital Fund and the Family Caregiver Alliance. With funding from The John A. Hartford Foundation to the AARP Foundation, the alliance undertook the study for an in-depth look at the specific complex tasks typically performed by trained health care professionals that family caregivers are doing, including:
- A majority (82 percent) manage medications
- Almost half (48 percent) prepare special diets
- Half (51 percent) assist with canes, walkers or other mobility devices
- Over a third (37 percent) deal with wound care
- One third (30 percent) manage incontinence
“Many of the changes in the health care system, such as earlier discharge and chronic disease self-management, carry major expectations for families to step up to more complex care and involvement. Yet, too often they are unprepared and do not get the support they need to assume these important roles,” Young added. “This report provides direction for future action to improve the lives and capacity of family caregivers.”
The report underscores the work led by the Family Caregiving Institute at the Betty Irene Moore School of Nursing, established to advance research, education and policy to support caregivers in the demands that impact their mental, physical and financial health, as well as threaten their quality of life.
“We know that family caregivers are the unsung heroes that millions of older adults depend upon every day,” said Terri Harvath, institute director. “This study, along with our video collaborations with the AARP Public Policy Institute, illustrates the need to understand the multicultural diversity among family caregivers and the increasing complexity of the care they’re required to provide. We must improve how communities and health care teams support this growing, often-unrecognized workforce.”
Harvath leads the School of Nursing’s collaboration with the AARP Public Policy Institute on a series of tutorial videos for family caregivers as they manage complex nursing activities within their homes. In October 2018, bilingual videos focusing on incontinence were filmed in simulation spaces within Betty Irene Moore Hall, the home of the School of Nursing on the UC Davis Sacramento campus. To date, more than two dozen videos on four topics and in multiple languages have been produced.
To read the full Home Alone Revisited report, visit https://www.aarp.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.