09 May 2019

Untrained caregivers bear burden of care for families

One of the most demanding tasks performed by untrained home caregivers is managing incontinence.

Twenty million largely self-taught home caregivers in the United States perform complex medical tasks for family members and friends, a new report says.

That means that half of the nation's 40 million family caregivers do things typically performed by health care professionals, such as giving injections, preparing special diets, handling tube feedings, and dealing with specialised equipment.

Worried about making mistakes

Seven out of 10 of the caregivers doing these tasks also face the stress of managing pain relief for the people in their care as the country battles an opioid addiction crisis, according to report.

The report is a combined effort of AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing.

"This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks," said Susan Reinhard, senior vice president and director of the AARP Public Policy Institute.

"About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system – with providers and hospitals – to help support these family caregivers," she added in an AARP news release.

Major findings

The medical and nursing tasks being performed by caregivers include managing medications (82%); assisting with canes, walkers or other mobility devices (51%); preparing special diets (48%); dealing with wound care (37%); and managing incontinence (30%).

Among the major findings in the report:

  • Family caregivers are largely on their own in learning how to perform medical/nursing tasks such as managing incontinence and preparing special diets.
  • Most family caregivers who perform medical/nursing tasks feel they have no choice.
  • Only 20% of family caregivers were given at least 24 hours' notice of hospital discharge.

"Family caregivers are the linchpin in our health care system, particularly for older adults," Rani Snyder, programme director at The John A. Hartford Foundation, said in the news release.

"This study shines new light on the diversity of family caregivers performing complex tasks – from men to millennials to multicultural populations – and 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 health care team," Snyder said.

Image credit: iStock


Ask the Expert

Incontinence Expert

Dr Prenevin Govender completed his MBChB at the University of Cape Town in 2001. He obtained his Fellowship of the College of Urologists in 2009 and graduated with distinction for a Masters in Medicine from the University of Cape Town in 2010. His special interests include laparoscopic, pelvic organ prolapse and urinary incontinence surgery. He consults full-time at Life Kingsbury Hospital in Claremont.

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