About a quarter of the nation’s 40 million family caregivers live with the fear that they will make a mistake on vital medical tasks such as giving injections or caring for wounds that could harm their loved ones, according to an AARP report released this week.
“Many of the changes in the health care system, such as earlier discharge and chronic disease self-management, carry major expectations for families to step up to more complex care and involvement. Yet, too often they are unprepared and do not get the support they need to assume these important roles,” said Heather Young, dean emerita at the Betty Irene Moore School of Nursing at the University of California, Davis. “This report provides direction for future action to improve the lives and capacity of family caregivers.”
The report, which Young co-authored, was done to provide health-care workers and policymakers with a better understanding of the experience of family caregivers and with recommendations on how to better support them. The first step, Young said, is raising awareness that family caregivers play a crucial role in the medical care team, and once health care providers embrace this, they will come to understand that they must change how they interact with caregivers.
“When I was trained as a nurse, it was all about the patients,” Young said. “and in fact, sometimes, the family caregiver was in the way. We asked them to leave the room when we did things. Now, that’s got to change. If I’m doing a dressing change as a nurse, I’ve got to invite this family member in and say, ‘Come in. I want you to watch so you can learn because, when you go home, you’re going to be doing this.’”
About half of the nation’s 40 million family caregivers perform medical or nursing tasks for their loved ones at home, Young and other researchers found, and the other half take care of nonmedical tasks such as grooming, bathing or dressing a loved one. Of those who handle medical care, eight out of 10 administer medication, half prepare special diets and assist with mobility devices, and four in 10 perform wound care.
This is the second report that AARP has issued on family caregivers as part of her work with AARP and the Home Alone Alliance, a professional group dedicated to improving resources for people who have taken on the responsibility of caring for relatives at home. In the first report, Young and other researchers discovered that this trend is pervasive in U.S. society.
The latest report dispels the notion that caregiving is the sole province of women ages 50 and up who aren’t in the job market. Statistics actually showed: A little more than a quarter of them are millennials aged 22-38 and almost a quarter are Generation X’ers aged 39-53. Forty percent of those performing complex medical care typically done by medical professionals are male, and men make up 47 percent of those performing nonmedical tasks. People at all income levels are taking on the caregiving role, with 28 percent earning $34,999 or less, 29 percent, $35,000 to $74,999; 23 percent; $75,000 to $124,999, and 20 percent, $125,000 or more.
Millennials and Generation X caregivers are obviously balancing the challenges and strain of this role with childrearing and work, Young said. A lot of these working caregivers are not only directly caring for a loved one, she added, but they’re also doing care management – arranging appointments, taking relatives to appointments, picking up supplies, and other types of things.
“We know it’s causing strain,” Young said. “They’re worried about finances, about paying for the care, about what it means for their employment. Many people are scared to identify they are a caregiver at work because if your employer knows, you might be passed over for advancement or a promotion. It’s also really tough for people to balance the productivity demands at work with coordinating care.”
The report cites five major findings about family caregivers:
▪ They providing intense and complex care, performing medical and nursing tasks and managing care for relatives with multiple conditions that cause pain.
▪ They are diverse in their demographics and in their experiences.
▪ When socially isolated, they are at greater risk for experiencing difficulty with complex medical care.
▪ They experience both positive and negative effects from their role. For instance, they may be happy that their loved one can live outside a nursing home or other institution, but they also may feel stress and worry about things like making a mistake or managing their finances.
▪ They have been largely on their own when learning how to do complex medical care. They need better training and oversight from medical professionals in hospitals, in clinics and in doctors’ offices.
Young said she feels it’s really unacceptable that so many people feel worried about making a mistake that could put their loved one’s health in jeopardy.
“As a nurse, when I was first learning to do things like give injections and do complicated wound dressing, it scared me and I had a lot of training and support and people around me who were there to coach me and help me to figure it out,” she said. “I think about a lot of caregivers who go home and have never done this before. It’s the first time they see this problem, and they’ve got someone who’s very sick, whom they’re very worried about. It’s a lot of pressure.”
What this also could mean, Young said, is hospitals see more patients returning for readmission or emergency room care.
“When people are afraid and they don’t know who to turn to, the most logical choice is to just go back to the hospital,” she said. “And, if there isn’t a good hand-off when people leave the hospital and if there are not good community resources – a primary care clinic or resources out in the community like the Alzheimer’s Association – the default will be, ‘Well, I’ll go back to the hospital and get some help.’
It’s rare now that when people go back to the primary care office, Young said, that they have a nurse or other staff member who asks them to show them how they are doing some aspect of care and who will counsel them on how they could do it better. It’s rare even to be asked whether they have questions about it, she said, but that is what needs to happen.
Awareness is the first step in bringing about change, and that’s why AARP undertook this research, Young said. Many patients and caregivers were sharing their concerns with the organization. Since the first report in 2012, she said, AARP has been able to get legislation passed in 40 states, including California, that ensures hospitals are recording the caregivers’ names in patient files and preparing them for discharge.
Young has been doing other research that shows hospitals in states with these laws have begun to change their practice, documenting how they’ve instructed caregivers and including caregivers in care planning. It’s exciting, Young said, to be part of research that is actually benefiting families and changing medical practices.
Besides raising awareness of issues confronting caregivers, the new AARP report recommended that health care professionals update tools used to assess caregivers, probe for concerns and find resources to help, support caregivers providing complex care.
“We need the public to be more informed, so they can feel more confident in saying, ‘Hey, wait a minute. I’m not ready to go home. I need some more instruction,’” Young said. “It’s OK to ask for that. People don’t know they can ask for that. They may feel overwhelmed, and they may feel powerless.”
It also recommended that employers recognize their workforce includes many people who are caregivers and need family-friendly policies that support their effort. Likewise, the report recommended, community-based organizations should find ways to support caregivers, especially those who must provide complex medical care.
Finally, the report stressed that caregivers are a diverse group who defy stereotyping. Part of evaluating who should become a caregiver includes assessing willingness of family members. Sometimes, the report noted, a family may be looking to one individual to take the role but that individual is only doing so because they don’t want to face condemnation or negative judgment.
To help caregivers learn how to perform some medical tasks, AARP has teamed up with the Family Caregiving Institute at the Betty Irene Moore School of Nursing to produce 30 short instructional videos. The videos, which are on the AARP web site, cover topics such as managing, diet, feeding, incontinence, wound care and mobility.
“We’ve been developing these videos in Spanish and English,” Young said. “We have more to do, but this is an effort to get more resources out into the hands of people who need it.”