Today, AARP Public Policy Institute (PPI) and the United Hospital Fund (UHF) released a new report that finds 46% of family caregivers perform medical and nursing tasks for their carees with multiple chronic physical and cognitive conditions. The report, Home Alone: Family Caregivers Providing Complex Chronic Care, highlights the complexity of the care you provide at home and negates the assumption that your role as family caregiver can be easily mastered. (Your can read the full PPI and UHF Home Alone report here.)

Of the family caregivers surveyed, about 75% said they provide medication management – including administering IVs and injections – for a caree. More than a third also manage wound care. The majority of family caregivers complete these tasks on their own; two-thirds of carees did not have 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.”

Surveyed family caregivers recognized the value and importance of these medical and nursing tasks to their carees’ health; about 40% reported feeling stressed and worried about making a mistake. Moreover, 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,” 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 prevalent in the lives of family caregivers, the report recommends:

  • encouraging health care professionals and providers to reassess the way they interact with family caregivers;
  • ensuring that family 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.

What do you think? What additional recommendations would you add? How have you gained confidence in providing care? And, did you receive the training you needed? Please share your thoughts in our comments section, below.

About Denise

I began working with family caregivers in 1990 and launched Caregiving.com in 1996 to help and support them. Through my blog, I share words of comfort and offer coping strategies and tips. I also write opinion pieces about recent research, community programs and media coverage of caregiving issues. I've written several caregiving books, including "The Caregiving Years, Six Stages to a Meaningful Journey," "Take Comfort, Reflections of Hope for Caregivers" and "After Caregiving Ends, A Guide to Beginning Again." You can purchase my books and schedule a coaching call with me in our store.

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