“Every Home a Potential Hospital”

Challenges of family caregivers explored in Home Alone Revisited report

A new report reveals that half of the nation’s 40 million family caregivers are performing complicated medical and nursing tasks for their family members and friends. They give injections, prepare special diets, manage tube feedings, and operate medical equipment—procedures usually considered the purview of trained medical professionals--but many family caregivers do not feel properly trained to take on these responsibilities.

“It is presumed today that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member,” said Carol Levine, director of UHF’s Families and Health Care Project and one of the report’s co-authors.

About half of caregivers who perform medical/nursing tasks are worried about making a mistake. The more complex the task, the greater the worry. In addition, 70 percent of caregivers are dealing with the stress of managing pain relief, a problem made more difficult because of the national focus on opioid overuse. (See the infographic for more information from the survey.)

These are just a few of the key findings reported in Home Alone Revisited: Family Caregivers Providing Complex Care, a special report from the founders of the Home Alone Alliance—United Hospital Fund, AARP, Family Caregiver Alliance, and UC Davis-Betty Irene Moore School of Nursing. The report was funded by a grant from The John A. Hartford Foundation to the AARP Foundation. 

Home Alone Revisited is based on a nationally representative, population-based, online survey of 2,089 family caregivers, with additional analysis and research. It builds on the groundbreaking 2012 report Home Alone: Family Caregivers Providing Complex Chronic Care, the first national look at how family caregivers manage complicated medical tasks and provide many other kinds of help. 

Home Alone Revisited found that caregivers are remarkably diverse and include people of all cultural backgrounds who bring their own traditions and values to the experience. The stereotype of the middle-aged woman taking care of mom fails to recognize that 40 percent of caregivers are male and one in four are millennials, or that 40 percent of millennials and younger caregivers are supporting someone with a behavioral health condition. 

The report also makes clear that the emotional and time-consuming challenges of managing the health needs of a chronically ill or disabled relative or friend leave too many caregivers isolated and with mental and physical health problems of their own. Ten action-oriented recommendations covering not just health care and social service systems, but also employers, community-based agencies, and industry, lay out a broad framework for change. Among them are the development of caregiver assessment tools for both public and private programs that capture the complex nature of caregiving today. More tailored and ongoing caregiver instruction 

The full Home Alone Revisted report can be downloaded here.

For more information please visit www.aarp.org/homealone.