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Advocacy in Action: Defining Care, Counting Every Caregiver - Why Now is the Time for the CARE Act

  • Writer: Mark Fukae
    Mark Fukae
  • 3 days ago
  • 6 min read
63 million caregivers. One voice. Our unity is our strength in advocating for the CARE Act and ensuring every caregiver is seen, counted, and supported. #CaregiverAdvocacy #FederalCAREAct #CountEveryCaregiver
63 million caregivers. One voice. Our unity is our strength in advocating for the CARE Act and ensuring every caregiver is seen, counted, and supported. #CaregiverAdvocacy #FederalCAREAct #CountEveryCaregiver

By Mark Fukae, Director of Advocacy - Professionals Who Care | Founder, Caregiver Advocacy and Support Initiative (CASI)


Every morning, my reality is defined by caregiving. Whether it's the daily ebb and flow of supporting my mother through her advancing dementia, or the profound journey with my wife's mother, who now receives vital care through Colorado state Medicaid - a reality shaped by critical legislation like H.R. 1 - the personal always intersects with the systemic. This deeply lived experience has opened my eyes to a fundamental challenge in our nation: how we define, measure, and, consequently, support caregivers. The recently released "Caregiving in the U.S. 2025" report not only validates these personal truths but lays bare the critical need to challenge institutional biases in how we approach this indispensable work.


For too long, government and non-profit definitions of "caregiver" and "working caregiver" have been too narrow, often missing the vast majority of individuals shouldering immense responsibilities. This institutional bias creates an "invisible workforce," leading to a profound undercounting of the true scope of caregiving and its economic impact. Our latest analysis reveals an unprecedented 63 million adults in the U.S. currently serving as family caregivers, representing a staggering 45% increase since 2015 - a jump of approximately 20 million people (AARP & National Alliance for Caregiving, 2025). This figure expands significantly on past estimates, recognizing the true scale of what has often been overlooked. Crucially, this 63 million encompasses 59 million caring for adults and 4 million providing care for children with disabilities or complex illnesses, further highlighting the vast, yet often unacknowledged, care economy.


Comparative Analysis: Beyond the Numbers, What Are We Really Counting?


The report, drawing on comprehensive analysis by AARP and the National Alliance for Caregiving using a nationally representative, probability-based online survey panel of 6,858 caregivers, offers a critical comparative analysis of definitions, data collection, and best practices. It shows that inconsistent definitions lead to inaccurate data, which in turn results in insufficient policy and underfunded support.


Consider the reality of "working caregivers." The report indicates that approximately 70% of family caregivers aged 18-64 are also employed, equating to roughly 44 million caregivers juggling jobs while providing care (AARP & National Alliance for Caregiving, 2025). More than 18 million of these are hourly wage workers at greater risk of job and financial instability. This isn't just a statistic; it's a reflection of individuals like myself, navigating professional demands alongside intense care responsibilities. Yet, previous narrow definitions often failed to capture the complexity of this dual role, especially for segments like the "sandwich generation," who now comprise 29% of all caregivers - simultaneously supporting aging adults and dependent children. These caregivers are younger, more ethnically diverse, and more likely to work outside the home, but are often statistically underserved.


Accuracy, Interpretation, and the Urgency of Implications


The methodological best practices employed in the "Caregiving in the U.S. 2025" report are crucial because accuracy in data collection directly impacts interpretation and, ultimately, policy implications. When caregiving responsibilities are underestimated, so too are the economic burdens and the mental health toll. The report shows that unpaid caregiving contributes an astonishing $873.5 billion annually to the U.S. economy, equivalent to 3.2% of U.S. GDP (AARP & National Alliance for Caregiving, 2025). Yet, caregivers themselves face significant financial strain: half of all caregivers experience at least one financial hardship due to their caregiving responsibilities, with about 25% accruing debt or being unable to afford basic necessities such as food and medications. These are not mere figures; they are direct consequences of policies shaped by an incomplete understanding of caregiving's reality.


The report highlights that more than 40% of caregivers now provide high-intensity care, involving complex medical tasks such as injections, wound care, and use of durable medical equipment, yet only 22% have received any formal training for their caregiving roles. This gap puts both caregivers and care recipients at risk of injury, burnout, and critical errors. The average caregiver spends 27 hours per week providing care, with 24% exceeding 40 hours weekly - approaching the level of a full-time job.


The CARE Act: A Policy Forged in Reality, Driven by Data


This comprehensive data powerfully reinforces why the Colorado CARE Act and our proposed Federal CARE Act are not just necessary, but fiscally brilliant. My experience navigating Colorado's Medicaid system for my mother-in-law, and seeing the profound implications of H.R. 1 in action, directly informs our push for broader, more inclusive policies. The Colorado CARE Act, with its 22:1 return on investment, proved that recognizing and supporting caregivers creates tangible economic benefits. The Federal CARE Act is built on this same principle, projecting a 6:1 ROI by translating unpaid care into federal savings and a stable workforce.


These Acts directly address the institutional biases identified in the "Caregiving in the U.S. 2025" report. By pushing for presumptive telework rights, enhanced ADA integration, FMLA coordination, and flexible scheduling, we are creating policies that recognize the full 63 million caregivers as essential contributors to our economy and society, not just burdens. We are advocating for tax credits, direct family payments, and robust respite care programs, aligning with the consistently high public support for greater affordability and support for caregiving that appears across multiple surveys.


The Crisis is Looming: Why Now?


The data is clear: the caregiving crisis is set to intensify. Demographic projections show that Americans aged 65+ will soon outnumber those under 18 for the first time, while the pool of potential family caregivers shrinks. Colorado exemplifies this trend, with the 65+ population expected to increase nearly 50% by 2030 (Bell Policy Center, 2025), creating escalating demands for caregiver services. The state is projected to face a significant "caregiver gap" by 2030, in which demand for unpaid and paid care outstrips supply. This isn't a future problem; it's a looming crisis.


Accurate data, as provided by comprehensive reports like the "Caregiving in the U.S. 2025," is not a luxury - it's the foundation for proactive, effective policy. The methodological rigor of probability-based sampling with oversampling for underrepresented racial and ethnic groups, combined with transparent definitions and data disaggregation, provides the evidence base we need. We cannot afford to operate with outdated definitions or incomplete understandings. The time to act, to push for the Federal and Colorado CARE Acts, is absolutely now.


Your Voice Matters. Take Action!


* Read the full "Caregiving in the U.S. 2025" report (available through AARP and National Alliance for Caregiving websites)

* Learn more about Professionals Who Care (PWC) and our mission: https://www.professionalswhocare.org/

* Discover the Caregiver Advocacy and Support Initiative (CASI): https://casiadvocacy.org/

* Explore the details of the Colorado CARE Act and the Federal CARE Act: https://casiadvocacy.org/our-legislative-solutions/

* Join our growing movement and sign our petition: https://chng.it/zHbMzKnBwJ

* Let's keep the conversation going: Share your thoughts in the comments on how policies have impacted your life or the lives of those you care for.


References

Additional Data Sources Referenced


Note: All statistics cited have been cross-referenced with the comprehensive "In-Depth Analysis of Caregiving Data in the United States (2025)" report and associated reference documents provided. Data accuracy has been verified through multiple authoritative sources including AARP, National Alliance for Caregiving, Bell Policy Center, and associated academic and policy institutions.

 
 
 

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