Report: Caregivers tackling complex medical tasks with little training

Liz Seegert

About Liz Seegert

Liz Seegert (@lseegert), is AHCJ’s topic editor on aging. Her work has appeared in NextAvenue.com, Journal of Active Aging, Cancer Today, Kaiser Health News, the Connecticut Health I-Team and other outlets. She is a senior fellow at the Center for Health Policy and Media Engagement at George Washington University and co-produces the HealthCetera podcast.

Half of the nation’s 40 million family caregivers are performing complicated medical/nursing tasks for their family members and friends, including giving injections, preparing special diets, managing tube feedings, and handling medical equipment, according to a recent report from AARP. Additionally, 70% of these caregivers are dealing with the stress of managing pain relief amid a national opioid crisis.

Home Alone Revisited: Family Caregivers Providing Complex Care, builds on the original 2012 Home Alone study, which provided the first national glimpse into the challenges family or friends face when caring for an aging or ill loved one. This latest report, released this spring during the American Society on Aging conference, takes a deeper dive into the daily medical tasks family caregivers must perform — often with little to no training.

An estimated 20 million family caregivers are performing tasks usually reserved for trained professionals, such as giving injections, managing medications, managing tube feedings and dealing with incontinence issues. Many of these caregivers say they weren’t shown how to perform these functions and are learning as they go, according to Susan Reinhard, R.N., Ph.D., senior vice president and director, AARP Public Policy Institute.

“About half of family caregivers are worried about making a mistake,” Reinhard said. “We need to do a lot more across the health care system — with providers and hospitals — to help support these family caregivers.”

Many of these tasks used to be the responsibility of health professionals, but with cost containment and other issues pushing people out of the hospital sooner, it’s often left to family members to pick up the slack. Most family caregivers who perform medical/nursing tasks feel they have no choice, according to the report. Many also admit to feeling socially isolated, which can lead to increased difficulty in performing complex care due to a lack of emotional and practical support.

“We also found an interesting correlation between social isolation and income,” Reinhard said. “The higher the income, the less socially isolated people felt.” The exception was among African-American caregivers, where issues of isolation were prevalent regardless of income level. This finding flies in the face of cultural stereotypes and needs further exploration, she added.

Stress, worry, financial concerns and feeling the need to be vigilant increase as complex care demands grow, according to the report. Despite these burdens, the more medical/nursing tasks they perform, the more caregivers feel they are keeping their family member out of a nursing home. Yet caregivers are often largely on their own in learning how to perform difficult tasks, such as managing incontinence and preparing special diets. Three out of five caregivers whose family members were hospitalized in the past year report that they received instruction on how to perform medical/nursing tasks, but more work needs to be done by hospitals to identify family caregivers and provide timely notification.

The report analyzed results from a nationally representative, population-based, online survey of 2,089 family caregivers and found:

  • A majority of family caregivers (82%) manage medications;
  • Almost half (48%) prepare special diets;
  • Half (51%) assist with canes, walkers, or other mobility devices;
  • Over a third (37%) deal with wound care;
  • Nearly one-third (30%) manage incontinence;
  • Seven out of 10 family caregivers who perform medical/nursing tasks face the practical and emotional strain of managing pain.

Tasks such as preparing special diets also turned out to be highly stressful for many caregivers, the analysis found. “You think, how hard can it be, but it ranks pretty high in worry and lack of instruction,” Reinhard said, noting that shopping, reading labels, changing a loved one’s eating habits and their food choices are stressful and gets to family caregivers.

“And remember one in four caregivers are millennials, who are more likely to be working while juggling all of this,” she added.

The report concluded that hospital discharge planners, care managers and clinicians need to be more sensitive to the burdens of family caregivers and at least make sure that whoever is taking care of the patient is informed and aware of the types of tasks they will face.

“You have to anticipate questions or concerns,” said Reinhard. Caregivers often don’t know what they don’t know. While the CARE Act (Caregiver Advise, Record, Enable Act) has helped improve communication between health professionals and family members as they prepare for complex care at home, implementation across the more than 40 states that have enacted the legislation varies widely.

While caregivers receive some instruction at discharge, most said they needed more. Uncertainty about performing complex medical/nursing care adds to stress and makes them more vulnerable to mental health issues, such as depression and anxiety, according to Reinhard.

The report concluded that caregivers must be included as valuable members of the health care team in decision making, feel comfortable voicing concerns and given appropriate instruction. Health systems, policymakers and employers must offer more support for family caregivers, Reinhard said.

It’s not a partisan issue — it’s a human one, she said.

Journalists may want to explore how hospitals, nursing homes and other facilities help prepare caregivers for the tasks ahead, particularly when more medically complex care is required. How much instruction or training does a family caregiver receive? Are there follow-up visits by a home health nurse or PA? Are there support services or programs available for respite? What about emotional and mental health support?

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