Lisa Simon, Partner, The Philanthropic Initiative
“There are only four kinds of people in the world—those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers.”
– Former US First Lady, Rosalynn Carter
More than 53 million Americans—21 percent of the US population—are caregivers for loved ones who are older adults or adults living with chronic, disabling, or serious health conditions. Increasingly, the US health and long-term care systems rely on family caregivers. In 2017, family caregivers in the US provided a staggering 80 percent of long-term care, valued at $470 billion, and in 2021, 38 million family caregivers spent 36 billion hours caring for older adults, amounting to an estimated $600 billion in unpaid caregiving.
Family caregiving is often a deeply rewarding experience, yet caregiving tasks take a toll on caregivers’ physical, mental, and financial health, in addition to their retirement security, careers, and social support networks. During the COVID-19 pandemic, a caregiver mental health crisis emerged. For working caregivers, combining work in the labor force with unpaid work as a family caregiver often feels unsustainable. In a June 2021 national study conducted by the CDC Foundation and ARCHANGELS, 70 percent of caregivers reported a current mental health issue and 33 precent reported recent suicidal thoughts.
As with many issues, government and corporate support alone may not be enough to effect change. Health philanthropy is emerging as a major and expanding source of innovation, advocacy, and support of a range of strategies to sustain the health, well-being, and effectiveness of family caregivers, and to reinforce their critical role. One example is Exhale, The Family Caregiver Initiative, a large regional program supported by the Health Foundation for Western and Central New York, Ralph C. Wilson, Jr. Foundation, and Ann Arbor Area Community Foundation, and managed by The Philanthropic Initiative (TPI). Exhale increases respite opportunities for family caregivers of older adults, which can reduce negative consequences, with 16 respite projects funded to date. Two projects with the greatest engagement thus far are summarized below.
Caregiver Tech Solutions (CTS), operating in Cattaraugus, Wyoming, and Chautauqua counties, New York, is a collaboration of Healthy Community Alliance, Total Senior Care PACE, and three county Offices on Aging. It uses individualized coaching and technology resources to provide respite to caregivers using a model that emphasizes flexibility to address what matters most to participants. The program focuses on how digital technology can help caregivers remotely achieve a sense of relief, learn self-care techniques, and solve new problems in caregiving. The program also distributes funds for technology solutions to caregivers. CTS shows positive outcomes when comparing pre- and post- caregiver assessments, including statistically significant decreases in overall caregiver burden, stress, and family disagreement among participants. Participants also report an increased sense of support, more frequent respite experiences, and “more time for me.” A typical response to a survey on CTS’ impact: “With the cameras installed, it was the first time I didn’t feel anxious and worried about leaving my mom while I went to Roswell Park for my own (cancer) treatment, as I was able to check in on her.” Others reported being able to grocery shop thanks to the cameras, and that loved ones enjoyed the distraction iPads and the like provided.
Musical Memories Café (MMC), a program of West Falls Center for the Arts, operates at four sites in Erie and Niagara counties, New York. MMC uses music, meal service, and supportive services to engage individuals with dementia and their caregivers in activities that offer entertainment, social support, and respite. Exhale is facilitating expansion and replication of the model in nearby communities; development of a website and onboarding tools supports that expansion. West Falls reports very high levels of engagement at all MMC sites and positive caregiver outcomes. Among participating caregivers:
- 88 percent said MMC helped reduce stress associated with caregiving,
- 95 percent felt emotionally supported,
- 84 percent said MMC helped them to be a better caregiver,
- 96 percent said MMC is beneficial to the wellbeing of their care recipient,
- 74 percent report they are better informed because of MMC, and
- 61 percent said MMC helped them find community resources to help with caregiving.
As one caregiver reported, “(My husband and I) started going to Musical Memories Café … And it was just the best thing that ever happened to us, because the musicians were just fabulous. They played feel-good music. Everybody joined in when there was singing, and especially the people with Alzheimer’s—they would clap, get up, and dance … I can’t say enough about how they touch your soul. And the caregivers just—that hour seems like a three-day weekend.”
The New York Academy of Medicine is evaluating Exhale, exploring the development and uptake of community-based respite solutions for family caregivers, and the impact of respite on caregivers’ health and well-being. Exhale’s evaluation reveals that its grantees have made significant progress and have begun to generate evidence regarding caregiver respite models, as well as challenges inherent in this work. Findings consistently show that participants are experiencing increased respite and improved self-reported well-being.
Our nation’s health and long-term care systems increasingly rely on caregivers, paid and unpaid. Given the aging of the Baby Boomers, longer life expectancies for persons with chronic and disabling conditions, and preferences for home and community-based living, the need for caregivers will only increase. By 2034, the number of older adults who may need long-term care is projected to surpass and continue growing relative to the number of available family caregivers. Returning to the words of our former First Lady and founder of the Rosalynn Carter Institute for Caregiving, demographics reveal that odds are, at some point in our lives, each of us will be a caregiver to an older adult close to us who needs help with daily living. With the many challenges caregivers face, and looming shortages of both paid and unpaid caregivers, it will be increasingly important to prioritize and invest in family caregivers, and philanthropy has a critical role to play.