—Jackie, in the just-released “It All Falls on Me”
Jackie is one of more than 40 million caregivers in the United States who provide help to a family member or friend with a chronic, disabling or serious health condition. Like Jackie, many of these caregivers regularly perform complex medical and nursing tasks to support them, often with little to no instruction or support.
In 2012, a joint AARP Public Policy Institute–United Hospital Fund report titled “ Home Alone” found that almost half (46 percent) of family caregivers provided support to their loved ones through medical and nursing tasks such as managing medication and wound care. The report also found that despite so many caregivers performing such tasks and the frequent contact between caregivers and the health care system, family caregivers were seldom adequately prepared by clinicians to take on these challenging tasks.
The “Home Alone” report continues to catalyze continued advancement, both in research and in concrete tools for caregivers. In fact, we’ve just released a new report that builds on “Home Alone” and advances this important field even further.
But first, what’s happened since the report’s release?
In 2015, AARP launched the Home Alone Alliance® — A Collaborative of AARP, to take action on the findings from this groundbreaking report and to create solutions and resources that support family caregivers. The Home Alone Alliance® brings together partners from the public, private and nonprofit sectors to fulfill its mission of empowering family caregivers through instructional tools and increasing the knowledge of health care professionals, specifically nurses, in how to help family caregivers learn complex tasks. A key component of the Home Alone Alliance’s® work is the production of videos that help family caregivers gain the skills and confidence to perform complex medical and nursing tasks.
And now comes the next stage of research.
“ It All Falls on Me,” a new report from the AARP Public Policy Institute and the United Hospital Fund, details the findings from a series of discussion groups designed to hear directly from family caregivers about their experiences. The discussions examined two common and challenging medical and nursing tasks — managing medications and doing wound care. It also sought insights into what kinds of video instruction caregivers would like to see on these tasks; as a result, the feedback and findings served as the basis for the Home Alone Alliance®'s first video series on medication management.
All discussion group participants were caregivers for an adult family member or friend, and many participants supported more than one person. The participants ranged in age from young adults to those 65 and older. Roughly two-thirds of participants were Latino or African American. Three languages were included in the focus groups: English, Spanish and Chinese. The discussion groups were organized by United Hospital Fund and held in New York City.
The new report discusses six key themes that emerged across the focus groups:
- The emotional impact of caregiving
- Caregivers’ resourcefulness
- Problems with medication management
- Lack of training on wound care
- Cultural and language differences
- Lack of coordination among health care professionals
The Home Alone Alliance® continues to develop resources and new videos to support family caregivers. Additional series will focus on such topics as mobility, wound care and preventing pressure ulcers, among others. The videos and other related free tools will live on AARP’s website. As the Home Alone Alliance® continues to make resources like the medication management videos available to caregivers, people like Jackie will be better prepared to support their loved ones.
Susan Reinhard is a senior vice president at AARP, directing its Public Policy Institute, the focal point for AARP’s public policy research and analysis. She also serves as the chief strategist for the Center to Champion Nursing in America, a resource center to ensure the nation has the nurses it needs.