Caregivers Providing Complex Medical Care: A Growing Trend

We already know that family caregivers provide personal care such as helping their loved ones with bathing, dressing, grooming, eating, and going to the bathroom. We also know that family caregivers are often involved in household tasks such as cleaning, cooking, paying bills, doing laundry, and providing transportation.

But did you know that 46% of family caregivers also perform complex medical and nursing tasks, oftentimes with little or no training?

It’s true, according to a recently published report by AARP’s Public Policy Institute and the United Hospital Fund. In the report, Home Alone: Family Caregivers Providing Complex Chronic Care, results are summarized from a national survey administered to 1,677 family caregivers about the tasks they perform.

© Scott Chan
© Scott Chan

Among those family caregivers who provide medical and nursing care:

  • 78% provide medication management, including administering IV medications and injections
  • 35% provide wound care, including preparation and application of bandages and ointments, treating bedsores, and changing and cleaning colostomies (a colostomy is an opening created in the abdomen so that waste can discharge from the colon)
  • 32% use meters and monitors such as glucometers to test blood sugar, blood pressure monitors, and other test kits
  • 25% perform enemas and manage other incontinence materials
  • 21% operate durable medical equipment, such as lifts to help loved ones get out of bed
  • 14% operate complicated medical equipment such as ventilators, tube feeding equipment, and home dialysis machines

Even after many years of working in eldercare, I was stunned to learn that so many of today’s family caregivers are performing medical and nursing tasks that previously were only executed by trained professionals in nursing homes, hospitals, and home health care agencies. Many of the caregivers who completed the survey said they had not received enough, if any, training to perform these precarious, high-level skills.

Keep in mind that these caregivers are already providing personal care and household help in addition to complex medical care. Not surprisingly, this “triple burden” of caregiving has consequences.

The survey revealed that family caregivers who perform medical and nursing care report high levels of stress, fear of making mistakes, depression, and poor health. Fifty-seven percent indicated that they didn’t feel they had a choice in whether to provide this kind of care. Included among their reasons were that there was no one else to provide care, they lacked insurance coverage or funds for care, or that they felt pressure from their loved ones or other family members.

On the upside, 51% thought that by providing complex medical care, they were delaying nursing home placement for their family members. But at what cost?

I can see why this disturbing trend has developed. Our elders are living longer, but often with multiple chronic medical conditions. The economy and convoluted health care insurance system make it difficult to afford the kind of services that provide complex medical care. And those services – even when they are affordable – are hard to find, especially in rural areas.

But that doesn’t mean that the eldercare and medical communities don’t have a responsibility to address this trend. Let’s get everyone involved! Hospitals, home health care agencies, long-term care systems, physicians, community agencies, and federal, state, and local governments must come together to take action to provide family caregivers with the training and support they need. By doing so, proper care can be delivered to elders with complicated medical needs without sacrificing the well-being of family caregivers.

I certainly hope that a culture of responsibility is on our horizon.

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