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.