The Caregiver Nation Summit 2025 opened with a declaration that should reframe every conversation in this space: "Turn data into action."
Not collect more data. Not commission another study. Not wait for better evidence.
The country does not lack caregiver data. It lacks the political will, operational infrastructure, and fiscal mechanisms to convert that evidence into policy.
What followed over two days was a masterclass in what happens when you stop asking whether to support caregivers and start asking how.
Summit Structure: From Data to Action
The summit unfolded in deliberate stages—each building toward legislative impact:
- Welcome keynote by Jason Resendez (National Alliance for Caregiving)
- The State of Caregiving in the US 2025 - Data presentation and panel
- Youth caregiver testimony by Feylyn Lewis (Vanderbilt University School of Nursing)
- Fireside chat with Emma Heming Willis on high-profile caregiving advocacy
- Policy panels on state progress and workplace caregiving support
- Senator Kim's testimony interviewed by Richard Lui (NBCU News Group)
- Congressional Awards Reception honoring Senator Susan Collins and Congresswoman Debbie Dingell
- Hill Day advocacy push for Older Americans Act (OAA) reauthorization
This wasn't a conference. It was an organized push to move caregiving from personal crisis to public infrastructure.
The Data Gallery: Education and Indictment
The Summit's signature partnership between the National Alliance for Caregiving (NAC) and AARP created a physical data gallery—charts, graphs, testimonials, and demographic breakdowns contextualizing what we already know:
- 63 million Americans are caregivers—a 45% increase since 2015
- They provide $600 billion in unpaid labor annually
- 78% report financial strain (up from 46% in 2015)
- 72% experience moderate to high emotional stress
- 70% of working-age caregivers feel unsupported at work
- 61% face workplace impacts
- 25-30% of caregivers are men, challenging outdated assumptions
The gallery served dual purposes: educating advocates and policymakers while indicting years of legislative inaction.
Every panel represented years of research that policy has failed to implement. Every data point was a legislative opportunity left on the table.
The message was clear: The bottleneck is not knowledge. It's translation.
Researchers know what caregivers need. Advocates know what works. Caregivers know what would help. The remaining job is political—embedding this evidence into legislation, funding formulas, program design, and systems architecture.
Lived Experience as Legislative Force
Throughout the Summit, personal stories served a specific function: they exposed the gap between what systems assume and what caregivers actually live.
The State of Caregiving in the US 2025 panel, moderated by Madeline Mitchell of USA Today, featured voices representing the breadth of caregiving realities—from professional researchers to family caregivers navigating complex medical conditions.
Suzanne Bottum-Jones: When the Caregiver Becomes the Patient
Suzanne Bottum-Jones, Care Partner at Boulder Crest Foundation, spent years caring for others while her own health deteriorated unnoticed. She discovered her illness after collapsing—highlighting how caregiving erases the caregiver's own medical needs from view.
Her story surfaced a structural truth: healthcare systems are designed to see patients, not the people keeping patients alive.
Rick Jones: "We'll Give You Whatever Time We Can Get You"
Rick Jones, family caregiver, described a healthcare encounter where the provider treated time with his loved one as a resource to be rationed—"we'll give you whatever time we can get you"—rather than as the foundation of care itself.
His account made visible the transactional logic that governs end-of-life care in systems optimized for throughput, not dignity.
Rita Choula and Regina Shih: Systems Perspective
Rita Choula from AARP brought policy expertise on how existing programs fail to reach eligible caregivers due to awareness gaps and navigation barriers.
Regina Shih from Emory Rollins School of Public Health and RAND Corporation highlighted the financial devastation of caregiving—out-of-pocket costs, lost wages, and the impossible choice between care quality and economic survival.
Youth Caregiving: Feylyn Lewis
Feylyn Lewis from Vanderbilt University School of Nursing shared her journey as a youth caregiver—part of the 1.5 million Americans under age 18 providing care with zero institutional support or age-appropriate resources.
Senator Andy Kim: Naming Yourself as Infrastructure
Perhaps the most significant moment came when Senator Andy Kim (D-NJ), interviewed by Richard Lui of NBCU News Group, described publicly identifying himself as a caregiver on the Senate floor—the first time he'd used that language in a formal political setting.
(I first saw Richard Lui speak at Blooming Day 2024, where he shared his own caregiver experience as a prominent news and media personality—moving testimony that stayed with me.)
"When you name it, the system starts to understand and support you."
This wasn't symbolic. Naming yourself as a caregiver is a structural intervention that unlocks:
- Workplace accommodations
- Family Medical Leave Act (FMLA) eligibility conversations
- Healthcare navigation pathways
- Policy recognition
- Political visibility
Senator Kim's testimony revealed that identity is operational infrastructure, not just representation.
Policy Solutions Already Exist
The Summit's policy discussions were not aspirational. They were concrete.
Speakers didn't propose vague "support for caregivers." They named specific legislative levers already available:
Medicaid and Medicare Integration
- Medicaid support for caregivers as formal participants in care teams with documentation rights
- Medicare billing code 99490 for chronic care management including caregiver training
- Respite care as a standard covered benefit, not a luxury add-on
- Care coordination reimbursement treating family caregivers as care team members
Financial Recognition
- CARES Act-style caregiver tax credit of $7,242 to reflect actual annual out-of-pocket costs
- Social Security caregiving credits to offset $522,000 lifetime earnings losses
- Employer-sponsored caregiver benefits with proven $3.13 ROI per dollar spent
- Paid family leave expansion beyond childbirth to include eldercare and disability care
Structural Protections
- Universal family leave that includes caregiving, not just childbirth
- Formal caregiver integration into care teams with documentation rights
- Paid respite programs modeled on successful state pilots
This wasn't brainstorming. It was a legislative to-do list.
The United States already knows how to strengthen caregiving infrastructure. It has chosen not to. The bottleneck is political will, not creativity.
Important context: While these policy levers were discussed, the summit also highlighted persistent gaps—universal family leave remains unavailable in most states, Medicaid respite coverage varies dramatically by location, and many eligible caregivers never access existing benefits due to awareness and navigation barriers.
Technology with Boundaries
Technology was discussed plainly and with clear limits.
What AI Can Do
- Monitor health patterns
- Facilitate triage decisions
- Automate documentation
- Navigate complex systems
- Coordinate between providers
What AI Cannot Replace
- Human connection
- Emotional labor
- Presence during crisis
- Judgment under stress
- Dignity in caregiving relationships
Rita Choula's caution cut through the hype: "We must protect the dignity of both caregiver and care recipient."
The Summit positioned technology as an assistive infrastructure, not a replacement workforce. Innovation is welcome, but only if it reinforces human caregiving rather than erasing it.
Caregiving Is Intersectional
A single caregiving "model" cannot address:
- Dementia vs. cancer vs. disability vs. pediatric conditions
- Youth caregiving (1.5 million under age 18)
- Racial and cultural differences in care norms
- Rural vs. urban resource access
- Socioeconomic disparities in support availability
The Summit repeatedly emphasized that culturally competent, condition-specific, and language-accessible supports are non-negotiable. Generic solutions fail diverse caregivers.
Community as the Only Functioning Safety Net
Until policy infrastructure catches up, solidarity is the only durable support caregivers can rely on.
The Summit showcased concrete models already working:
Peer Support Networks
- Caregiver Action Network's Peer Connect matching caregivers by condition and geography
- AARP's online community forums with 24/7 access to shared experience
- Local church and faith-based respite cooperatives providing rotating care coverage
Digital Platforms
- Text-based support systems (like GiveCare) meeting caregivers where they already are
- Care coordination apps integrating medical appointments, medications, and family communication
- Telehealth platforms connecting rural caregivers to specialist guidance
Community Resource Hubs
- Area Agencies on Aging (AAAs) providing local navigation assistance
- Hospital-based caregiver resource centers offering training and support groups
- Employer-sponsored Employee Assistance Programs (EAPs) with caregiver-specific counseling
Formal systems may fail. Community rarely does.
Day 2: Hill Day—and Why I Wasn't There
Day 2 was designated Hill Day, where advocates met with congressional offices to push for:
- Older Americans Act (OAA) reauthorization with expanded Title III-E National Family Caregiver Support Program funding
- Caregiver-specific provisions in Medicare and Medicaid legislation
- Increased appropriations for Area Agencies on Aging and caregiver respite programs
- Tax credit legislation recognizing caregiving as economic contribution
The goal: translate Day 1's data and testimony into legislative asks before the next appropriations cycle.
I wasn't there.
I drove back to New York because my 8-month-old got sick while my wife was traveling overseas.
Caregiving happens. That's the underlying truth of the entire Summit.
Policies shift. Travel plans collapse. Responsibilities collide. And caregivers absorb the impact every time—often at the cost of participation in the very advocacy meant to support them.
My absence on Hill Day was exactly the point the Summit was making: caregiving is unpredictable, compulsory, unplanned, and structurally unsupported.
The people living inside those realities are still expected to show up, testify, advocate, and push policy forward—while the system offers no accommodation for the labor that defines their lives.
The Unifying Principle
Across data, stories, policy, technology, and community, the Summit converged on one principle:
Caregiving is essential public infrastructure, not a private family problem.
Every session pointed to the same conclusion: caregivers need recognition, resources, protections, and systems designed around reality—not aspiration.
What This Means for Policy
The Summit made clear that incremental improvements will not suffice. The system needs fundamental redesign around principles already proven to work:
Employer Leadership
Companies with robust caregiver benefits see:
- 43% reduction in caregiver turnover
- 31% decrease in stress-related absences
- $3.13 return for every dollar invested
Peer Support Impact
Caregivers with access to peer networks report:
- 52% reduction in isolation
- 37% improvement in confidence
- 29% decrease in depression symptoms
Integrated Care Models
Programs coordinating medical, social, and emotional support achieve:
- 41% reduction in caregiver burden
- 33% decrease in unnecessary ER visits
- 28% improvement in care recipient outcomes
These aren't hypotheticals. They're proven interventions waiting for political implementation.
The Path Forward
The 2025 Caregiver Nation Summit wasn't about raising awareness. It was about operationalizing what we already know.
The work ahead is not conceptual. It's:
- Translating research into legislative language
- Embedding caregiver provisions into existing programs
- Building interoperability into fragmented systems
- Funding what works instead of piloting endlessly
- Treating caregivers as essential infrastructure, not volunteer labor
The data exists. The solutions exist. The political will remains the final barrier.
For those building technology, creating policy, or designing services in this space—the Summit offered a clear mandate:
Stop building what you think caregivers need. Start implementing what they've told us would help.
63 million Americans are waiting.
Summit Contributors
The Caregiver Nation Summit 2025 brought together diverse voices committed to advancing caregiver support:
Opening & Leadership: Jason Resendez (National Alliance for Caregiving)
Caregivers & Advocates: Suzanne Bottum-Jones (Boulder Crest Foundation), Rick Jones (Family Caregiver), Feylyn Lewis (Youth Caregiver, Vanderbilt University), Emma Heming Willis (Author & Care Partner), Anneliese Barron (One Family Foundation), Jessica Guthrie (Caregiving Consultancy), Kelly Pennie (Family Caregiver, MN), Randi Ervin (Family Caregiver, PanCAN)
Research & Policy Leadership: Regina Shih (Emory Rollins School of Public Health/RAND Corporation), Rita Choula (AARP), Nancy LeaMond (AARP), Alison Barkoff (George Washington University), John McHugh (Virginia Commonwealth University), Liz Richards (Delaware Cares Coalition), Ben Veghte (Washington Cares Fund)
Clinical & Healthcare: Tara Anglim (Northwell Health), Allison Applebaum (Icahn School of Medicine at Mount Sinai), Angelique Caba (CancerCare), Arpita Gandhi (OHSU), Erin Kent (UNC Chapel Hill)
Corporate & Foundation Leadership: Terri Stewart (EMD Serono), Sheri Biller (The Sheri and Les Biller Family Foundation), Melissa Hagerman (Genworth Financial), Alice McGrail (EMD Serono), Lindsay Jurist-Rosner (Wellthy), Rani Snyder (The John A. Hartford Foundation)
Media & Moderators: Madeline Mitchell (USA Today), Richard Lui (NBCU News Group)
Legislative Leadership: Senator Andy Kim (D-NJ), Senator Susan Collins (Congressional Awardee), Congresswoman Debbie Dingell (Congressional Awardee), Governor Spencer Cox (Utah)
Organizing Partners: National Alliance for Caregiving, AARP
The Caregiver Nation Summit 2025 was hosted by the National Alliance for Caregiving in partnership with AARP. Learn more about their ongoing advocacy at caregiving.org.
Have thoughts on caregiving policy or lived experience to share? Reach us at info@givecareapp.com.