Family caregivers performing complex care.

When my mother needed care at home in her final days, she was fortunate in that two of her daughters were nurses who were familiar and comfortable in providing her care. We were fortunate in that she did not require complex care like tube feedings or IVs or ostomy care or wound care or dialysis. But many people do, and must rely on family members to do these complex tasks.

I remember how I felt as a nursing student when I had to administer one of these complicated interventions. I remember being anxious, my hands sweating as I desperately tried to recall the list of instructions I had looked up the night before.

And yet I had an instructor with me to walk me through it. Family caregivers have no such support and often don’t even get adequate instruction beforehand.

Family caregivers need more than recognition.

November is National Family Caregivers month and I can’t think of a group more in need of recognition. But while naming a month in their honor is nice to increase awareness of the more than 40 million family caregivers in this country, they need much more than that. Specifically, they need more in the way of:

  • real assistance with physical care.
  • reimbursement for expenses not covered by insurance or Medicare/Medicaid.
  • ongoing teaching and professional guidance.
  • respite care and support for themselves.

Research on family caregivers providing complex care conducted by the AARP and partners in 2019 documents the pressing needs of these caregivers.

AJN working with AARP to support and inform family caregivers.

Under the leadership of Susan Reinhard, PhD, RN, FAAN, of AARP’s Public Policy Institute, the Home Alone Alliance (HAA) initiative works to provide information and resources to support caregivers. AJN has been working with AARP since 2008 to create evidence-based resources that nurses can use to teach and give to caregivers.

A continuing series for caregivers.

This month we published a guest editorial by Reinhard and Heather Young, associate vice chancellor for nursing, dean, and professor in the Betty Irene Moore School of Nursing at the University of California, Davis. The authors note: “As the border between hospital and home blurs, and more care is shifting to community settings, family caregivers are paying the price,” as they struggle with such issues as pain management, their own social isolation, and many other challenges.

Also in this issue we launch another installment of the Supporting Family Caregivers: No Longer Home Alone series with an article, “Eating for Health Aging.” The article is a review of what we know about nutrition in older adults; an installment in our upcoming December issue will focus on practical aspects of encouraging eating. Articles on managing urinary incontinence are planned for upcoming months. All are free to read and contain links to videos.

Through our work with AARP and other partners in the HAA, we offer a series of articles and videos that you can access from a central resource page on our website. The articles contain a review of evidence and a “Tips for Caregivers” sheet that can be given to caregivers to remind them of key steps in a task.

Videos for instructing family caregivers.

There are also links to videos that show, step by step, how a caregiver can perform a procedure. The teaching videos are available for free (some in Spanish) at the Home Alone Alliance website. They cover many complex tasks, and daily care like incontinence management, giving medications, transferring from bed to chair or into the bath—things that can be daunting for those unaccustomed to providing care.

You can also listen to a podcast conversation with Susan Reinhard in which she discusses caregiver issues.