Family caregivers fill an essential role in our fractured long-term services and supports (LTSS) system. In 2021, the estimated economic value of family caregivers’ unpaid contributions was approximately $600 billion, based on about 38 million caregivers providing an average of 18 hours of care per week for a total of 36 billion hours of care, at an average value of $16.59 per hour. This conservative estimate does not consider the financial cost of care (out-of-pocket and lost wages) or account for the complexity of care provided (i.e., medical/nursing tasks). This $600 billion estimate for 2021 is up from $470 billion in 2017 and continues a 25-year trend of increasing economic value. It also corresponds to studies that have found that the value of unpaid family care vastly exceeds the value of paid home care.
This report pulls from multiple sources to profile who family caregivers are and the challenges they face and includes several first-person accounts of the experience. It takes a detailed look at recent developments and promising federal and state policies that support family caregivers, as well as promising practices in the public and private sectors, including the positive representation of caregivers in popular media. It concludes with specific recommendations.
PROMINENT ISSUES IN FAMILY CAREGIVING
By the year 2034, adults ages 65 and older will outnumber children under the age of 18, and the share of potential caregivers is projected to continue shrinking relative to the number of older adults potentially at risk for needing long-term care. Demographic trends of population aging, shifts in fertility and timing of first births, and the increasing racial and ethnic diversity of the US population all help explain the key prominent issues in caregiving: sandwich generation caregivers, working caregivers, direct care workforce shortage, diverse caregivers.
The balancing act of “sandwich generation” caregivers
In 2019, roughly 30 percent of family caregivers of older Americans lived in a household that also includes children or grandchildren. They are increasingly Gen Z and millennial caregivers and are more likely than other caregivers to be working while performing their caregiving responsibilities.
The impacts of caregiving on employment for working caregivers
Sixty-one percent of family caregivers work either full or part time. Working caregivers face financial risks such as lost income, reduced career opportunities and savings, and subsequently lower Social Security and retirement benefits.
The impact of post-pandemic shortages in the direct care workforce on family caregivers and care recipients
Direct care workforce shortages, exacerbated during the pandemic, result in more hours of care and higher-intensity care by family caregivers. While the workforce is expected to grow from 4.6 million in 2019 to 5.9 million by 2028, the challenge is in retaining workers in a field with an average turnover rate of 40 to 60 percent each year and providing sufficient pay and training.
Meeting the needs of Black/African American, Hispanic/Latino, Asian American, and Native Hawaiian and Pacific Islander family caregivers
The trend of growing diversity is highly relevant to family caregiving because Black/African American, Hispanic/Latino, Asian American, Native Hawaiian and Pacific Islander, and American Indian and Alaska Native family caregivers report distinct care experiences and specific support needs. Their care recipients likewise have distinct care needs and health trajectories. In addition, LGBTQ family caregivers make up roughly nine percent of all caregivers in the country and face a distinctive set of challenges in caring for LGBTQ partners, friends, and older family.
PROMISING POLICY AND PRACTICE SUPPORTING CAREGIVERS
Significant federal and state policy developments and meaningful steps, in both the public and private sectors, have taken place in the four years since the 2019 release of the last Valuing the Invaluable update, some spurred by the pandemic. This report reviews many of those advancements in detail. It reviews policies and practices that continue pre-pandemic efforts as well as those that stemmed from the COVID-19 Public Health Emergency (PHE).
Major Federal Initiatives
The National Strategy to Support Family Caregivers
The National Strategy came out of the RAISE Family Caregivers Act (enacted in 2018) and offers a unified approach to improving recognition of and support for family caregivers. It highlights hundreds of actions at all levels of government and the private sector, including some already underway, to recognize family caregivers and give them the help they need.
Public Health Emergency (PHE) Acute Hospital Care at Home (AHCaH) Waiver
This CMS waiver expanded Hospital at Home (HaH)—a long-standing US care model providing acute hospital care in patients’ homes.
Supplemental benefits under Medicare Advantage
In 2019, Medicare Advantage plans included additional flexibility to offer beneficiaries new and expanded supplemental services, such as LTSS and support services for family caregivers of enrollees.
American Rescue Plan Act of 2021
The Act included a temporary increase for certain Medicaid home- and community-based services (HCBS) expenditures to address HCBS workforce issues, expand service capacity and help family caregivers and their care recipients on an HCBS waitlist, among other things.
Spousal impoverishment protections
Ensure the spouse of a person receiving Medicaid HCBS isn’t required to spend down all of their assets in order for the spouse to receive supportive services.
Expanded supports for caregivers of veterans
The VA MISSION Act, enacted in 2018, expanded the Department of Veterans Affairs (VA) Program of Comprehensive Assistance for Family Caregivers (PCAFC) to include family caregivers of veterans who served prior to September 11, 2001.
State Level Initiatives
Many states are exploring ways to offset the financial costs of caring for a family member including caregiver tax credits or other reimbursement programs.
Workplace Flexibility Policies
- Paid family leave: 11 states and the District of Columbia have enacted paid family leave programs.
- Paid sick leave: A total of 14 states now require paid sick leave, and an additional two have enacted general paid time off laws that allow for paid sick leave.
Caregiver Advise, Record, and Enable Act
A total of 45 states and territories now have CARE Act laws in place, which support family caregivers when their relatives go into the hospital and as they transition home.
Policies should not only enable training for providers, direct care workers, and families but also support the economic well-being of family caregivers. Three areas of focus should be:
- The National Strategy to Support Family Caregivers offers a unified, clear plan for implementing coordinated supports for family caregivers across a range of areas—health care, social support, and economic—and highlights an array of actions at all levels of government and in the private sector, including some that are underway. Steps must be taken to build on the actions, goals, and outcomes in the National Strategy while ensuring that all publicly funded programs and caregiver support services account for the diverse needs of diverse family caregivers.
- To ease the financial costs of caregiving, policymakers should provide financial assistance and relief to family caregivers through a federal or state tax credit. Policymakers should also consider reforms that would protect and, if possible, improve Social Security benefits for people who provide caregiving to children, older adults, and others. Additionally, publicly funded HCBS programs should use participant-directed (sometimes referred to as consumer-directed) service models that permit payment to family caregivers.
- Policymakers should strengthen the federal Family and Medical Leave Act (FMLA) and state FMLAs, including expanding protections to apply to all workplaces and all primary caregivers, including those caring for kin or longtime friends. Family and medical leave needs to be paid so caregivers can afford to take time off. Working caregivers also need earned sick days that workers can use for short-term personal or family illness or to take relatives to medical appointments, workplace flexibility policies, and protection from discrimination based on their caregiving responsibilities.
Reinhard, Susan C., Selena Caldera, Ari Houser, and Rita B. Choula. Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers. Washington, DC: AARP Public Policy Institute. March 8, 2023. https://doi.org/10.26419/ppi.00082.006
- Insight on the Issues - Valuing the Invaluable: 2019 Update, Charting a Path Forward (English PDF)
- Insight on the Issues - Valuing the Invaluable: 2019 Update, Charting a Path Forward (Spanish PDF)
- Detailed Methodology (PDF)
- State Estimates (PDF)
- Press Release
- Infographic - Valuing the Invaluable: Understanding the Contributions of Family Caregivers, 2019
- Insight on the Issues - Valuing the Invaluable: 2015 Update, Undeniable Progress, But Big Gaps Remain (PDF)
- Valuing the Invaluable: 2015 Update, Undeniable Progress, But Big Gaps Remain - Detailed Methodology (PDF)
- Infographic - Valuing the Invaluable: Putting a Dollar Value to Family Caregiving, 2015
- Insight on the Issues - Valuing the Invaluable: 2011 Update, The Growing Contribution Costs of Family Caregiving (PDF)
- Fact Sheet - Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving in 2009 (PDF)
- Insight on the Issues - Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update (PDF)
- Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update - Detailed Methodology (PDF)
- Issue Brief - Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving, 2006 (PDF)
- In Brief - Valuing the Invaluable: A New Look at the Economic Value of Family Caregiving, 2006 (PDF)
- Data Digest - State Estimates, 2006 (PDF)
- Valuing the Invaluable: Caregivers and the Economic Value of Caregiving, by State, 2006 (PDF)
- Accelerating the Pace of Change for Caregiving Families
July 21, 2015
- What Are We Doing to Support Our Valuable Family Caregivers?
July 17, 2015
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