Renata Louwers has a hard time getting her blood drawn. The needle, the pinprick of pain, the viscous liquid flowing out of her arm — they make her queasy.
So, Louwers had to steel herself when her husband, Ahmad Khoshroo, developed metastatic bladder cancer four years ago at age 72.
Within months, as a tumor pressed on his spine, Khoshroo was taking heavy-duty opioids and Louwers was administering his medications. When he developed blood clots following a stay in intensive care, she injected a blood thinner into his belly.
Figuring out what to do as her husband’s eventually fatal disease progressed was a nightmare. Louwers remembers getting hastily delivered, easily forgotten instructions from hospital nurses and, later, limited assistance from a home health agency. “It wasn’t much, and it was incredibly hard,” she said.
Now, groups around the country are mobilizing to help family caregivers like Louwers manage medications, give injections, clean catheters, tend to wounds and perform other tasks typically handled in medical facilities by nurses or nursing assistants.
In December, 15 organizations joined a new national consortium, the Home Alone Alliance, devoted to providing better training and instructional materials for family caregivers. Founding members include the AARP Public Policy Institute, the Family Caregiver Alliance, the United Hospital Fund and the Betty Irene Moore School of Nursing at the University of California, Davis.
This week, the alliance released a series of 10 short videos (five each in English and Spanish) designed to help caregivers deal with seniors who use canes or walkers and need help getting up or down stairs, into a wheelchair, or in and out of a tub or a shower.
Two of the videos deal with falls — the most common cause of injury among older adults.
This summer, nine videos on wound care and topics will be added and include dealing with newly sutured wounds, bed sores, cellulitis and diabetic foot care, among other topics. By the end of the year, another 20 videos should be available.
Potential topics include nutrition, the use of specialized equipment such as nebulizers, feeding tubes and oxygen tanks, and a revised series on medication management — a topic profiled in a pilot project for the alliance.
Organizations across the country will be free to put the videos on their websites. The goal is to disseminate them as widely as possible and “bridge the gap between what family caregivers are expected to do and what we actually teach them to do,” said Susan Reinhard, director of AARP’s Public Policy Institute.
That gap was highlighted in 2012, when AARP and the United Hospital Fund’s Families and Health Care Project published a groundbreaking report on medical and nursing tasks undertaken by caregivers. It found that 46 percent helped patients who required specialized care, but few got adequate training.
After the study’s publication, AARP started compiling educational materials from around the country that addressed caregivers’ increasingly complex responsibilities. There wasn’t much available.
With the United Hospital Fund, AARP convened focus groups and asked people what would be helpful. Don’t overwhelm us with information; break the material into chunks focusing on concrete tasks, they said. And tell us a story that we can relate to, involving people like us — not doctors and nurses, they requested.
Ongoing research into what works, from family caregivers’ perspective, will be an integral part of the Home Alone Alliance. And while videos will be a core component of the consortium’s offering, they won’t be the only one.
“It may be that within certain Asian communities, a video isn’t the best approach — we may want to partner with Asian resource centers and do ‘train the trainer’ sessions about caregiving,” said Heather Young, founding dean and a professor at the Betty Irene Moore School of Nursing at UC Davis.
In African-American communities, churches are a pillar of caregiving support and the focus may be on “helping congregations build their capacity,” Young said. “You can equip one person at a time all you want, but if there isn’t a broader context of support, a net around them, it’s very difficult to sustain the caregiving.”
Meanwhile, alliance members are developing plans for disseminating materials. The Family Caregiver Alliance will incorporate them in a new online platform for caregivers, FCA CareJourney — a source of support and resources that is still under development.
FCA began producing videos for family caregivers about four years ago; its Caregiver College series and SafeAtHome series have been watched by about 500,000 people to date. “We’re going to a more visual information exchange society,” said Kathleen Kelly, FCA’s executive director.
The U.S. Department of Veterans Affairs partnered with AARP in producing the alliance’s video series on mobility. It plans to post the videos on the VA’s caregiver website and encourage their use by patients discharged from rehabilitation and those served through its home-based primary care program, said Meg Kabat, national director of the VA’s Caregiver Support program.
Recognizing the value of videos, the VA’s Office of Rural Health has created a 20-module series on caring for someone with dementia and a five-part series on managing challenging behaviors associated with dementia. An extensive compilation of materials on various health conditions, Veterans Health Library, is also online, and another valuable resource for caregivers.
What’s missing from the current offerings is advice on dealing with older adults who are frail and have multiple conditions. Catherine Yanda’s 91-year-old mother, Mary, is in this situation: She has end-stage dementia, sarcopenia, heart disease, incontinence, frequent skin tears and difficulty swallowing — a set of problems that Yanda has had to figure out how to manage, largely on her own.
“I learn what to do as it happens,” said Yanda, who turns to FCA’s website for support and websites for nurses for information. “You go to whatever site helps you deal with the problem you’re trying to address. I’m lucky because I have the belief system that I can do it. But for some people, it’s just too much.”
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.