When her husband came home from the hospital with open wounds, Jackie was terrified. She'd had a few lessons in the hospital about cleaning them, but in reality, “nothing prepared me,” she said.
The experience Jackie -- a pseudonym used in the report -- had was among more than one dozen testimonials included in a new report by the United Hospital Fund and AARP Public Policy Institute. It found family caregivers feel acutely unprepared for the challenges and tasks they're faced with, and there's a dearth of resources to help them, even as they fill increasingly essential roles in the healthcare system.
“There's a lag in the general understanding of what caregiving can involve today,” said Carol Levine, a co-author of the report and the director of the United Hospital Fund's Families and Health Care Project. “We're at a point where we need to develop the kinds of resources that are readily available, easily accessible to caregivers,” she added.
Paying for home-based long-term care tends to be substantially less expensive than care in a nursing home. In 2010, according to the CMS, a semi-private room in a nursing room cost $205 per day, while hiring a home health aide cost $21 per hour.
Family caregiving is not what it once was. Informal duties like accompanying someone to the doctor's office have evolved into tasks that Levine says more or less constitute skilled nursing care. Family members now clean the wounds of their loved ones, dispense medications and try to sort out questions about side effects.
Today, 65.7 million Americans are estimated to be involved in informal or family caregiving to people who are ill, disabled or elderly. But they are not necessarily trained or ready for their new roles. Nor do they find resources to help them adequate, the report showed. It drew on six discussion groups conducted with 33 family caregivers -- 20 women and 13 men -- in New York in English, Spanish and Chinese from March 2015 through December 2015.
Managing medications posed frequent problems, these discussions revealed. Caregivers had questions about dosages, tried to identify similar-looking pills and negotiated with loved ones who refused to take medications.
Another issue was the lack of coordination among medical professionals. Family members who had advanced illnesses were the only ones being seen by teams of doctors, and other caregivers relied on community doctors, nurses and pharmacists.
These problems can be expected to worsen as the population bulge of the baby boomer generation ages. In 2000, 13 million Americans needed long-term care; by 2050, that figure is expected to reach 27 million. Meanwhile, older Americans are increasingly relying on informal care instead of a combination of formal and formal care.
In 2012, an earlier report by the United Hospital Fund and AARP found that nearly half of family caregivers across the U.S. were taking on medical and nursing responsibilities, like changing catheters, often without help.
One concern is that an untrained caregiver can potentially cause harm to the person they are caring for. But it's also possible to minimize that threat, Levine said
“I think the risk is there, but it can definitely be lessened by good instruction and good follow-up,” she said. A caregiver might not know how to treat an infected wound, but they can recognize warning signs and know when to call the doctor. “It's having that connection to a healthcare provider who will listen and make some good solid clinical judgment,” Levine said.
The United Hospital Fund also reviewed existing training materials for family caregivers and found that most focused on stress reduction and self-care, rather than the medical tasks caregivers are taking on. There were other inadequacies, too -- they took place in unrealistic settings, and they failed to acknowledge the emotional realities of one family member caring intimately for another.
As a result, the AARP produced a series of videos to guide family caregivers, and it plans to create more.
Still, videos are just one element to help family caregivers. “The videos are one tool,” Levine said. “They need to be used in conjunction with good clinical care as well.”