Supporting Family Caregivers: Addressing a Critical — and Growing — Public Health Issue
The need for a robust, coordinated approach to supporting family caregivers has never been greater . Each year, at least 53 million people1 provide informal, usually unpaid, care and support to older adults and people of all ages with disabilities, including people with mental health conditions and people with lifelong complex medical conditions . In addition, at least 2 million grandparents — and an unknown number of other relative caregivers — carry the responsibility for caring for children whose parents are unable to do so . The number of family caregivers is increasing rapidly due to growing populations of older adults and people with disabilities; the long-standing shortage of direct care workers, which reached crisis proportions during the pandemic and has continued; the continuing opioid crisis and other issues that are creating thousands of new “grandfamilies” each year; the lack of affordable, accessible child care for children with disabilities; and a variety of other factors .
Caregiving includes a wide variety of tasks to meet the individual needs of the person receiving support . Family caregivers routinely perform tasks such as housekeeping, transportation, and financial management, but the care they provide also can include intense and complex care requiring training and support to perform safely and effectively . They also supervise paid workers, coordinate services, and advocate for the people they support . Family caregivers most often provide support to help people live in their own homes and communities rather than in nursing homes and other institutions . However, it also can include support provided to older people and people with disabilities who live in institutional settings.
Family caregiving can be rewarding and personally satisfying, but it often comes at a significant personal cost to the caregiver . When family caregivers do not have sufficient training, support, and opportunities for rest and self-care — as far too many do not — their own health, well-being, and quality of life can suffer . Their financial future can also be put at risk . When family caregivers can no longer provide support, the people they care for often are left with no choices except to move to nursing homes or other institutional facilities or to foster care . These alternatives generally result in poorer outcomes at far greater costs — typically borne by taxpayers . Improving support to family caregivers is, therefore, an urgent public health and economic issue.
Establishing a Framework for Action: 2022 National Strategy to Support Family Caregivers
The 2022 National Strategy to Support Family Caregivers marked an important milestone in our national efforts to address the longstanding need for a comprehensive system of family caregiver support . This first-of-its-kind roadmap represented an unprecedented collaboration between a broad cross-section of the federal government and the private sector . The report is the product of comprehensive analysis and input from 15 federal agencies and more than 150 organizations representing a range of stakeholders from across the United States.
The strategy is built upon more than two decades of incremental progress toward improving support for family caregivers by the federal government, including the development of a range of programs and services for family caregivers across the age and disability spectrum.
Based on the fundamental principle that each family caregiver deserves and needs to be recognized, assisted, included, supported, and engaged, the strategy sought to:
- Align federal, state, tribal, local, and other stakeholder responses to a set of goals and outcomes informed by thoughtful recommendations
- Foster collaborations within and across stakeholder groups
- Optimize existing family caregiver support efforts by reducing redundancy, improving information sharing, and incorporating best practices systemwide
- Prioritize efforts to advance equity for unserved and underserved populations of caregivers
- Ensure that all efforts to uplift caregivers are person- and family-centered, trauma-informed, and culturally competent
Structure of the Strategy
The National Strategy consists of multiple components, each of which can stand on its own but, when taken together, present a comprehensive vision for better recognizing and supporting family caregivers . The National Strategy’s four components include:
- 2022 National Strategy to Support Family Caregivers — An overview and description of key issues, as well as the strategy’s five goals and intended outcomes within each . The goals are:
- Goal 1: Increase awareness of and outreach to family caregivers
- Goal 2: Advance partnerships and engagement with family caregivers
- Goal 3: Strengthen services and supports for family caregivers
- Goal 4: Ensure financial and workplace security for family caregivers
- Goal 5: Expand data, research, and evidence-based practices to support family caregivers