While family, kinship, tribal, and other informal caregivers provide most of the support to those needing assistance to remain independent in their communities, they often do so with the help of paid direct care professionals. Learn more about the landscape of caregiving in the U.S., including the importance of strengthening supports for informal and family caregivers and ensuring we have a strong, competent, and well-paid direct care workforce.
Federal Resources
- 2022 National Strategy To Support Family Caregivers — Includes nearly 500 actions that can be adopted at every level of government and across the public and private sectors to ensure that family caregivers have the resources they need to maintain their own health, well-being, and financial security (Administration for Community Living, 2022)
- Caregiving for Family and Friends — A Public Health Issue— Data collected from community-dwelling adults 45 years of age and older in 2015- 2017 through the Behavioral Risk Factor Surveillance System. Additional data reports: Alzheimer's Disease and Healthy Aging Data Portal (Centers for Disease Control and Prevention, 2018)
Other Resources
- Together in Care Issue Brief— Strategies to enhance the partnership between DCWs, family caregivers, and consumers by recommending improvements in communication, training, and integration of care services (PHI and National Alliance for Caregiving, 2024)
- RAISE Act State Policy RoadMap or Family Caregivers: The Direct Care Workforce— Roadmap to support states interested in developing and expanding supports for family caregivers (National Academy for State Health Policy, 2022)
- Families Caring for an Aging America— Provides an overview of the prevalence and nature of family caregiving of older adults as well as its personal impact on caregivers’ health, economic security, and overall well-being (National Academies of Sciences, Engineering, and Medicine, 2016)
- Medicaid Structured Family Caregiving (SFC): Enabling Family Members to Make Caregiving Their Primary Focus— Examines how three states are using Medicaid-funded SFC services to help older adults remain in the homes they share with their loved ones (National Academy for State Health Policy, 2022)
- Valuing the Invaluable: 2023 Update Strengthening Supports for Family Caregivers— Highlights the challenges faced by family caregivers and their significant contribution to the long-term services and supports system (AARP Public Policy Institute, 2023)
- Policy Brief: How the 2024 Medicare Physician Fee Schedule Advances Supports for Family Caregivers— Introduces new billing codes that allow eligible practitioners to bill Medicare for training and educating caregivers of patients with chronic illnesses or disabilities (National Alliance for Caregiving, 2023)
- The Direct Care Worker and Family Caregiver Initiative— Draws attention to the policy barriers, research needs, and workforce interventions that can create a more sustainable long-term care system (National Alliance for Caregiving & PHI, 2023)
- From Momentum to Movement: Developing a Unified Strategy to Support Family Caregivers Across the Nation— Guides implementing statewide caregiving strategies to address community-level needs, including a process to foster the development of actionable goals in state plans (National Alliance for Caregiving, 2021)
- Caregiving in a Diverse America: Beginning To Understand the Systemic Challenges Facing Family Caregivers— Expands on the diverse experiences of family caregivers and provides important policy recommendations to help aid family caregivers in their important tasks using data from the Caregiving in the U.S. 2020 study (National Alliance for Caregiving, 2021)
- Intersectional Analysis of Autism Service Inequities: Narratives of Black Single Female Caregivers— Challenges faced by caregivers of children with autism, focusing on their experiences navigating health care systems and accessing services, and the need for tailored support and improved caregiver training (Science Direct, 2023)