The federal Administration for Community Living (ACL) has awarded Community Catalyst a four-year grant to develop, test, and disseminate new approaches for increasing awareness of family caregivers and building support for their unique concerns. As part of that grant, the LeadingAge LTSS Center @UMass Boston will be evaluating these efforts.

In 2020, an estimated 53 million people were providing informal, usually unpaid care and support to aging family members and family members with disabilities. The RAISE 2022 National Strategy to Support Family Caregivers—which drew on extensive research by the LTSS Center and Community Catalyst—presents a roadmap of state and federal policy steps to address the unmet needs of these caregivers. But the RAISE recommendations require the grassroots power of family caregivers across the country to ensure their implementation.

The new work will build on the success of the Changing the Care Conversation project, which was led by Community Catalyst’s Center for Consumer Engagement in Health Innovation in partnership with the LTSS Center and Grantmakers In Aging. The project convened 10 state-based family caregiving coalitions, each of which recruited family caregivers and worked with them to tell their personal stories as a means of advocating for change in their communities. The coalitions developed policy priorities, met with state legislators and administrators, led statewide caregiving summits, and formed statewide family caregiving advisory committees, all focused on boosting recognition, support, and inclusion of family caregivers. The LTSS Center evaluated the efforts of these coalitions as they built advocacy infrastructure.

Specific aims for the new ACL project include adding three to five more state coalitions and providing capacity building training through coaching and technical assistance. “These are coalitions of caregivers who intimately understand the challenges they face,” says Verena Cimarolli, director of health services research and partnerships for the LTSS Center (left). “They are eagerly seeking a platform to place family caregivers and the family members they care for at the forefront of policy making. Community Catalyst will educate and collaborate with them on how to use their voices to bring change to their diverse communities. Our job at the LTSS Center will be to see if these efforts are making a difference.”