Half of the country’s 40 million family caregivers are assisting loved ones with activities of daily living and performing medical and nursing tasks without training, suggesting an opportunity for senior living providers, according to a report released Wednesday in conjunction with the American Society of Aging annual meeting in New Orleans.

“Family caregivers are the linchpin in our healthcare system, particularly for older adults,” said Rani E. Snyder, program director at The John A. Hartford Foundation. “This study … is a rallying cry for an all-hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the healthcare team.”

The foundation provided funding to the AARP Foundation for the research, “Home Alone Revisited: Family Caregivers Providing Complex Care,” which was undertaken by the AARP and other founders of the Home Alone Alliance (the United Hospital Fund, the Family Caregiver Alliance and the University of California Davis–Betty Irene Moore School of Nursing). It revealed that family caregivers are performing tasks typically performed by trained professionals. For instance:

  • 82% manage medications
  • 48% prepare special diets
  • 51% assist with canes, walkers or other mobility devices
  • 37% deal with wound care
  • 30% manage incontinence

Other family caregivers administer injections, manage tube feedings and handle medical equipment, according to the report.

“They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., senior vice president and director of the AARP Public Policy Institute as well as one of the authors of the report. But it doesn’t have to be this way, she told McKnight’s Senior Living.

Senior living communities could be sites of education for family caregivers, Reinhard said.

“One of the Home Alone Alliance members suggested this several years ago, but there were no teaching tools,” she said. “That’s one reason we got into the development of videos and tip sheets. We would welcome this.”

It’s in providers’ best interests that family caregivers be well-trained to perform the medical and nursing tasks they are called to do, Reinhard said.     

“Family caregivers who are not offered guidance and information are on their own in figuring out what to do,” Reinhard said. “They are trying their best but lack of knowledge and skill development could lead to undermanaged conditions.” And some older adults with such undermanaged conditions may end up in senior living communities where they health is more complicated to address than it should be.

The report also calls for public programs to include assessments of family caregivers’ needs when the care they provide is part of a person-centered service plan, noting that the federal government included such language in the 1915(i) state plan option for Medicaid beneficiaries who choose to live in the community to receive long-term services and supports.

“The assessment should include [medical / nursing] tasks. And this provision should be extended to other Medicaid home and community-based waivers,” the report authors wrote, adding that “discharge planners and community advisers as well as policy makers must acknowledge that not all caregivers have the necessary physical, emotional, or financial resources to do the job expected of them. …Relying on family may be the first and legitimate response, but it should not be the only one. The assessment can be a guide to finding additional sources of ongoing support in the community. Leaving family caregivers to find help on their own is a failure of professional responsibility.”

“Family members often take their relative out of the assisted living home for visits,” Renhard said. “They are then responsible for giving medications and other treatments as needed. They need training.”