Family caregivers are all around us, from the son or daughter assisting older parents to the relative looking after a child with mental or physical challenges. These dedicated individuals may have flown under the radar in the past, but there are efforts afoot to highlight the important roles they play and to make their lives and work easier.
An estimated 63 million Americans fall into this category, and their work is often difficult and isolating, with many carrying added personal burdens and suffering from burnout and stress.
To bring greater focus to these issues, a National Academy for State Health Policy webinar convened experts from four states where HHS Administration for Community Living funding is at work, providing caregivers the attention they deserve. The grants are designed to fund programs under the 2022 National Strategy to Support Family Caregivers.
Presenters from Maryland, Massachusetts, Wisconsin and California discussed how they are using the funds to provide family caregivers with greater resources and more comprehensive support.
Progress in Maryland
Molly Wisniewski, Family Caregiver Program manager for the Maryland Department of Aging, explained how the state is using funding to address Goals 2, 3 and 5 of the National Strategy to Support Family Caregivers. Goal 2 for the state involves cross-agency collaboration with the Maryland Commission on Caregiving, and training respite care ambassadors to help caregivers. Goal 3 includes the creation of a centralized resource website and training for laypeople to educate and support specific populations. Goal 5 focuses on using the Maryland Caregiver Survey and additional data to inform policy and program activities.
Wisniewski said successes include a significant expansion of commission membership, two new subcommittees, the launch of the Respite Ambassadors program, added caregiver training, a new peer-reviewed Johns Hopkins Memory Care Checklist, and a new focus group employee. “In Maryland, family caregivers are essential to keeping people at home and in the community, but they often navigate fragmented systems with limited coordination,” Wisniewski said, noting that the state is committed to improving the situation.
Resources in Massachusetts
Molly Evans, senior manager for Strategic Programs and Innovations with the Massachusetts Executive Office of Aging and Independence, outlined four objectives under the grant program: 1) A cross-agency workgroup to identify programming priorities, 2) Replicable initiatives to mitigate caregiver burden and isolation and improve their well-being, 3) An accessible resource guide, and 4) An analysis of Behavioral Risk Factor Surveillance System data to support policy change.
Evans shared survey data showing that burnout, stress and fatigue are the top challenges faced by caregivers, with inadequate resources a close second. “Here in Massachusetts, we started with a simple observation that caregivers already interact with many parts of the government, but the system doesn’t always recognize them in a coordinated and person-centered way,” she said. “Our grant was formed in response to this.”
According to Evans, successes to date include a social media awareness campaign, workgroup meetings during National Caregiver Month, a Family Caregiver Innovation Grant Program that has made five awards, and deployment of a BRFSS Caregiver Module to help policymakers access data and look for trends and changes.
Support in Wisconsin
Lynn Gall, manager of Family Caregiver Support and Lifespan Respite Programs for the Wisconsin Department of Health Services, outlined four goals for the state’s efforts: Better awareness and outreach about caregiving, improved engagement and partnerships, enhanced services and support, and better workplace and financial stability for caregivers.
She said achievements included new videos about caregivers and available resources; a redesigned resource website; outreach for rural, youth, veteran and African American caregivers; representation at advocacy events; and, evidence-based career training.
Strides were also made in encouraging employers to recognize and support staff members caring for relatives. Three companies of different sizes were recognized for their caregiver-friendly work cultures under the Wisconsin Exemplary Employer Award initiative. “Workplace and financial security is really a big push we’ve been having,” Gall said. “This was a rewarding program that we are going to continue into the future.”
Success in California
Theresa Weaver, project director for the Division of Policy, Research and Engagement, California Department of Aging, shared the state’s efforts to heighten awareness and reach out to caregivers; develop connections for health care, home and community-based service providers; and improve access to training for caregivers, under the CalCARES program.
Weaver said two key aspects are recognizing caregivers’ ethnic and cultural diversity, and spotlighting their importance to the community. “We are building a multilingual media campaign, materials and toolkit,” she said. “We are holding ethnic media briefings as well as community outreach webinars, and releasing a state acknowledgment of caregivers through proclamations and resolutions.”
————————
The inaugural phase of the Administration for Community Living Caregiver AI Prize Challenge is under way, with a focus on improving care for older adults and people with disabilities. Technology companies that are creating AI tools to enhance care delivery can compete for millions of dollars in prize funding. Learn more.