Many Americans report being overwhelmed by the demands of caring for aging loved ones, and a new study suggests a key reason: They are expected to be medical providers.
Some 46 percent of family caregivers perform medical and nursing tasks for care recipients with multiple chronic physical and cognitive conditions, according to a survey of 1,677 family caregivers by the AARP Public Policy Institute (PPI) and the United Hospital Fund (UHF).
The report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” examines the complexity of tasks caregivers provide and finds they go well beyond personal care and household chores that are routine for most people, or can be easily learned.
More than 42 million Americans act as unpaid family caregivers for loved ones, the report notes. Of the 46 percent doing medical and nursing tasks, three in four provided medication management -– including administering IVs and injections; and more than a third reported doing wound care. Others had to operate specialized medical equipment and monitors. Moreover, most of these caregivers are working solo -- two-thirds of the care recipients had no home visits by a health care professional, the study said.
“We know that family caregivers provide help with activities such as bathing and dressing, shopping, cooking and preparing meals," Susan Reinhard, Senior Vice President and Director of the AARP Public Policy Institute stated in a press release. As hospitals "discharge patients quicker and sicker," Reinhard stated, "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."
Some 40 percent of those surveyed reported feeling stressed and worried about making a mistake; a third rated 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," noted Carol Levine, UFH Director of Families and Health Care Project noted in a statement. “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.”
The recommends encouraging health care professionals and providers to reassess the way they interact with caregivers, ensuring that caregivers are 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. For help with caregiving, check out the AARP's Caregiving Resource Center.