New Report Finds Almost Half of Family Caregivers Perform Medical and Nursing Tasks
Medication Management, Wound Care Part of New Normal for Caregivers
Today, AARP Public Policy Institute (PPI) and the United Hospital Fund (UHF) released a new report that finds 46 percent of family caregivers perform medical and nursing tasks for care recipients with multiple chronic physical and cognitive conditions. The report, Home Alone: Family Caregivers Providing Complex Chronic Care, explores the complexity of tasks that caregivers provide and challenges the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master.
The PPI and UHF report is based on a national survey of 1,677 family caregivers who were asked about the medical and nursing tasks they perform. It is the first population-based survey to ask caregivers detailed questions about these tasks, including what they find difficult about performing them. There are more than 42 million unpaid family caregivers in the United States, and of the 46 percent of family caregivers performing medical and nursing tasks, three out of four provided medication management – including administering IVs and injections – for a loved one. Further, more than a third of these caregivers providing medical and nursing tasks reported doing wound care. Other tasks included operating specialized medical equipment and monitors. Family caregivers are doing these difficult tasks largely on their own; two-thirds of the care recipients had no home visits by a health care professional.
“We know that family caregivers provide help with activities such as bathing and dressing, shopping, cooking and preparing meals. We also ask caregivers to do things that would make even nursing students tremble; it’s important that we understand the scope of this new normal,” said Susan Reinhard, Senior Vice President and Director of the AARP Public Policy Institute. “As hospitals discharge patients quicker and sicker, we’re finding that family caregivers are responsible for medical and nursing care including medication management and wound care.”
Even though family caregivers in the survey recognized the value and importance of these medical and nursing tasks to their family members’ health, 40 percent reported feeling stressed and worried about making a mistake. Moreover, a third said their own health was fair or poor.
“The family caregivers in our survey reported that their chronically ill family members were in and out of hospitals and emergency departments. Despite frequent encounters with the acute care system, family caregivers were not prepared for the medical and nursing tasks they were expected to provide at home," added Carol Levine, Director of Families and Health Care Project for United Hospital Fund. “We asked family caregivers how they learned to manage their family members’ medications, for example, and 61 percent said, ‘I learned on my own.’ Clearly, professionals need to do a better job of training family caregivers.”
Because these tasks are becoming more and more prevalent in the lives of family caregivers, the report recommends actions including: encouraging health care professionals and providers to reassess the way they interact with caregivers, ensuring that caregivers are well trained and prepared to perform difficult tasks, revising how caregiving tasks are labeled and identified, and including family caregivers’ needs in the development of new models of care.
The online survey was conducted by Knowledge Networks in December 2011. Knowledge Networks maintains a large, nationally representative panel of survey respondents randomly recruited through probability-based sampling. Households were provided with access to the Internet and hardware if needed.
The full PPI and UHF Home Alone report is available at http://www.uhfnyc.org/publications/880853. Home Alone: Family Caregivers Providing Complex Chronic Care was funded by a grant from the John A. Hartford Foundation.*
AARP is a nonprofit, nonpartisan organization, with a membership of more than 37 million, that helps people 50+ have independence, choice and control in ways that are beneficial to them and society as a whole. AARP does not endorse candidates for public office or make contributions to either political campaigns or candidates. We produce AARP The Magazine, the definitive voice for Americans 50+ and the world's largest-circulation magazine; AARP Bulletin, the go-to news source for the 50+ audience; AARP VIVA, a bilingual lifestyle multimedia platform addressing the interests and needs of Hispanic Americans; and national television and radio programming including My Generation and Inside E Street. The AARP Foundation is an affiliated charity that provides security, protection, and empowerment to older persons in need with support from thousands of volunteers, donors, and sponsors. AARP has staffed offices in all 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands. Learn more at www.aarp.org.
The United Hospital Fund is a nonprofit health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York. The Fund’s longtime focus on family caregiving includes landmark reports, initiatives targeting health care providers, and a website (www.nextstepincare.org) with free guides to help family caregivers and health care providers work together more effectively. Learn more at www.uhfnyc.org.
* Funding information was added to this text on October 15, 2012.
Resources for family caregivers and health care providers are available at our Next Step in Care website.