AARP Eye Center
Building a Family Caregiving Strategy to Align with the Real Needs of Families
By Lynn Friss Feinberg, January 11, 2018 09:44 AM
In workplaces and at kitchen tables across the country, Americans are grappling with a growing issue that touches so many of us: the enormous struggles we face when caring for relatives and friends who need ongoing help because of a chronic illness, disability, or a serious health condition.
Although family caregiving is an intensely personal issue, it also has become a critical public policy matter that can no longer be ignored. It touches just about every family in every state across party lines. That’s why a national conversation about the health, economic, and social issues facing family caregivers has never been more important. Equally important is finding public policy and private-sector solutions to effectively support caregiving families. We cannot afford to wait because the care gap is growing. In just eight years (2026) baby boomers begin to turn 80 years old—the age when people are most likely to need long-term services and supports (LTSS).
Fortunately, policymakers are at last hearing the call. Acknowledging the growing urgency to promote the well-being of caregiving families, Congress just passed the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.
Rising Complexity, Greater Costs
Family caregiving in the U.S. is complex and characterized by many challenges. An estimated 40 million family caregivers provide about $470 billion annually in unpaid care to their adult relatives, partners, or friends with limitations in daily activities; 60 percent of these family caregivers hold jobs on top of providing and coordinating care. Almost half (46 percent) perform complex medical/nursing tasks, including managing multiple medications, with little guidance or support. According to Caregiving in the U.S. 2015, another 3.7 million family caregivers provide care to a child under age 18 because of a medical, behavioral, or other condition or disability, and 6.5 million family caregivers care for both adults and children.
Research shows that family caregivers of persons with high care needs are at risk of financial hardships. Family caregivers who cut back on work hours or leave the labor force due to caregiving demands may lose income, career opportunities, Social Security, and other retirement benefits.
A Policy Roadmap to Set Priorities
The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to form a family caregiving advisory council to advise and work with the Secretary to develop a coordinated family caregiving strategy. The strategy will recommend actions that communities, health and social service providers, government, employers, and others can take to address the increasing challenges facing America’s families in their caregiving role. Through the advisory council and mechanisms for public input, an array of stakeholders in the public and private sectors will build a foundation for new thinking and meaningful change.
The Act would implement the federal Commission on Long-Term Care’s recommendation that Congress require the development and implementation of a national strategy to support family caregivers. A National Academies’ Consensus Committee has also called for a family caregiving strategy that explicitly and systematically addresses the roles and needs of family caregivers in the nation’s health care and LTSS systems, and in workplaces.
Core Elements of a Family Caregiving Strategy
The RAISE Family Caregivers Act aims to promote greater adoption of person- and family-centered care, taking into account both the individual and the family caregiver in all health and LTSS settings. It will also result in recommendations on assessment and service planning for persons receiving care and their family caregivers, address financial security and workplace issues, and identify education and training supports and respite options, among other issues. In addition, the strategy could assist state and community efforts in recognizing and supporting caregiving families.
A Call to Heightened Action
With strong leadership and vision, the forthcoming strategy will recognize the centrality of family caregivers in American life. In that strategy lies the opportunity to shift policy and practice toward the fundamental principle that support for family caregivers should be an integral part of our nation’s collective responsibility to help people with complex care needs—ultimately resulting in a more humane and caring society.
It’s been a long time coming. Our voices are being heard.
Lynn Friss Feinberg, MSW, is a senior strategic policy advisor for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.