The Invisible Workforce That Determines Whether Your Patients Age at Home or in a Hospital Bed

It is 6:45 a.m. in a split-level home in the suburbs of Washington DC, and a 74-year-old retired engineer named Harold is standing in his bathroom doorway, trembling. Harold has moderate Alzheimer disease (AD). He does not know why the shower is running. He does not recognize the woman gently guiding his arm. Thirty seconds ago, he was certain she was an intruder. Now he is confused but compliant. By 7:15 a.m., he will be dressed, seated at the kitchen table, and eating oatmeal that has been prepared to a texture he can swallow safely.

The woman who made this happen earns only $17 an hour. She has no employer-sponsored health insurance. She drove 40 minutes to get here. She will do this again tomorrow, and the day after, and the day after that – because she is one of nearly 4 million Americans doing the single biggest job in this country. And nobody in Harold’s neurology care team even knows her name.

This is a story about the largest occupation in America, the neurological disease burden it silently manages, and why pretending this workforce doesn’t exist may be the most expensive mistake in modern healthcare. As the leader of CareYaya, a social enterprise connecting thousands of health care students to care for older adults with dementia, I see the human cost of this invisibility every single day, in every family that calls us because they've exhausted every other option, because our country’s care workforce is completely overlooked and underinvested in. That needs to change now.

The Question That Should Rearrange Every Conversation About Health Care At Home

Here is a question I have started asking colleagues at neurology conferences, and almost nobody gets it right: What is the single largest occupation in the United States?

They guess nurse. They sometimes guess teacher. They often guess retail worker. Reasonable answers, sure, because those are the jobs we talk about, the jobs that show up on cable news, the jobs politicians like to stand in front of when they announce a “jobs plan”.

But according to the U.S. Bureau of Labor Statistics’ occupational employment data for May 2024, the answer is home health and personal care aides: 3,988,140 workers.¹ That figure has since been updated to approximately 4.3 million.² That is bigger than retail salespersons. Bigger than fast-food and counter workers. Bigger than cashiers, bigger than customer service representatives. For context, registered nurses – the clinical workforce we rightfully celebrate – number about 3.28 million, making them enormous but still smaller than the aide workforce that often determines whether their patients stay safely at home.

Let that recalibrate for a moment: care work is not a “niche”. It is not a sentimental sidebar to the “real economy.” It is the economy. And if you are a neurologist managing patients with AD, Parkinson disease, multiple sclerosis, stroke recovery, or any of the progressive conditions that dominate your clinic, this work is directly relevant to you. Through our work at CareYaya partnering with neurology providers to help dementia patients at home, I see that this care workforce is the connective tissue between your treatment plan and your patient’s daily reality.

Why This Is a Neurology Problem

Neurological disorders are now the top contributor to the global disease burden³ and the leading cause of long-term care needs among older adults. We have made extraordinary strides in treating heart disease and cancer, extending lifespans, only to face an epidemic of cognitive decline and neurological impairment on the other side.

An estimated 7.2 million Americans aged 65 and older are living with Alzheimer dementia today, a figure projected to reach 13.8 million by 2060 absent breakthrough interventions.⁴ Nearly 12 million family members and unpaid caregivers provided an estimated 19.2 billion hours of dementia care in 2024, care valued at $413.5 billion.⁴ Total payments for health care, long-term care, and hospice services for people 65 and older with dementia are estimated at $384 billion in 2025, a figure the Alzheimer’s Association projects will approach $1 trillion by 2050.⁴

The most important statistic to consider is that 80% of that care happens at home.⁵ Not in your clinic, and not in a hospital. But in living rooms, kitchens, and bathrooms across America, managed by family members who received a pamphlet at discharge and a phone number for the Alzheimer’s Association helpline, and by paid aides who often have less training than the barista who made your morning coffee. I know this not just from the literature but from living it through my work at CareYaya, and what we see on the ground confirms what the data shows: the gap between what neurologists prescribe and what families can actually execute at home is vast, and growing.

When those caregivers – both the paid and the unpaid – fail, your patients end up back in the emergency department. When they succeed, you may never hear about it. That asymmetry is the central delusion of our current system, that the entire infrastructure of neurological care is built on a workforce we refuse to see.

Built on Fragility

If you want to understand why the home care system wobbles, follow the money. The Bureau of Labor Statistics reports a median annual wage of approximately $34,900 for home health and personal care aides, compared with a national median of $49,500 across all occupations.² PHI’s 2024 analysis of direct care workers found that a large share of this workforce relies on some form of public assistance to survive.⁶

The demographics show a story about who America leans on and whom America undervalues. This workforce is 80% to 87% women. Home health aides are 30% Black or African American, more than double the national workforce average of 13%. Between 27% and 42% are foreign-born, compared with 19% for workers overall.⁷ In other words, we have constructed the largest occupation in the country on the labor of the people our economy has historically paid the least and respected even less.

And the workforce pipeline is not keeping up. The Bureau of Labor Statistics projects 17% employment growth for home health and personal care aides from 2024 to 2034, much faster than average, with roughly 765,800 job openings annually.² Most of those openings are not from growth; they are from replacement, as care workers leave for occupations that pay better and demand less. The turnover is a predictable consequence of asking people to perform intimate, physically demanding, emotionally exhausting work, for wages that often do not cover their own basic needs.

Now layer on the funding structure. Medicaid is explicitly described by the federal government as the largest payer of long-term services and supports.⁸ Home and community-based services (HCBS) now account for 63.8% of all Medicaid LTSS expenditures, an all-time high.⁹ That means the workforce keeping your patients with neurological conditions out of institutional care is funded overwhelmingly by a public program currently facing the threat of historic budget cuts through the 2025 reconciliation process.¹⁰ HCBS are optional Medicaid services, not mandated, making them among the first on the chopping block when states are forced to reduce spending.

For neurologists, this is the funding that determines whether your patient with moderate Alzheimer has a trained aide helping her bathe safely at 6:45 a.m., or whether she falls, breaks a hip, and arrives in your hospital’s emergency department at 8 a.m.

The Clinical Consequences of This Invisibility

In my work running a nationwide caregiving platform CareYaya that connects thousands of health care students to care for older adults with dementia, I see the downstream effects of this workforce crisis every day. Families who cannot find qualified help. Older adults who want to age at home but are one missed medication or one undetected urinary tract infection away from a hospitalization. Caregivers, both family members and paid aides, who are managing behavioral and psychological symptoms of dementia (BPSD) without any training in de-escalation, without frameworks for understanding that a patient’s agitation is a neurological symptom, not a personal rejection.

The Alzheimer’s Association’s 2025 report quantifies the human toll on the caregivers themselves: dementia caregivers are 30% more likely to smoke, 27% more likely to develop hypertension, and significantly more likely to delay their own medical care.⁴ Nearly 60% have at least one modifiable risk factor that increases their own probability of developing dementia. We are watching the caregiver workforce literally develop the diseases of the people they care for.

The big story here is not that “nobody wants to work”, but that we have built an essential labor market on fragility and then act surprised when it wobbles. Evidence-based caregiver training programs like Reach II and Savvy Caregiver have demonstrated real improvements in caregiver mastery and patient outcomes in randomized controlled trials.^11,12 But these programs remain woefully underscaled. The gap between what we know works and what we actually deliver to families is one of the most consequential implementation failures in neurology.

Emerging AI-powered solutions offer one promising bridge. At CareYaya, our NIH-funded YayaGuide platform that we started building at Johns Hopkins, uses artificial intelligence to deliver personalized, scenario-based dementia caregiver training – available at 2 a.m. when the crisis actually hits, not just during business hours when the helpline is staffed.¹³ Medicare’s GUIDE (Guiding an Improved Dementia Experience) model represents another step forward, offering funded care navigation and respite care.¹⁴ But technology and demonstration programs alone cannot substitute for a fundamentally restructured workforce infrastructure. They are necessary complements, not replacements.

What It Would Look Like to Act Like We Believe Our Own Data

If we took our own labor statistics seriously, that is if we treated the largest occupation in America with the same strategic attention we give to semiconductors, energy policy, or pharmaceutical innovation, then what would that look like?

It would start with visibility. Health care policy leaders should treat direct care the way they treat any strategic sector: with workforce projections, training pipeline investment, and outcome measurement. Investors should stop pretending that “healthcare innovation” ends at software demos and consider the workforce that determines whether older adults with neurological conditions can stay safely at home.

Then we would do the unglamorous work: portable benefits, predictable schedules, paid training, credentialing that actually stacks. A career path from aide to CNA to LPN to RN for anyone who wants it, with employers, states, and training institutions aligning incentives instead of pushing people out. Transportation support. Childcare support. Wage structures that reflect the skill, responsibility, and clinical consequence of the work being done.

The National Dementia Workforce Study, sponsored by the National Institute on Aging, is beginning to build the data infrastructure to understand this workforce in granular detail – surveying physicians, nurses, and direct care workers across nursing homes, assisted living, home care, and community medical practices.¹⁵ This is a critical step, but data without policy action is just documentation of decline.

A Direct Message to Neurology

NeurologyLive^® readers are in a unique position here. You are the clinicians delivering the diagnoses that change families’ lives forever. You see the fear in a spouse’s eyes when you explain what “moderate cognitive impairment” means for their future. You know that the treatment plan you prescribe is only as effective as the ecosystem that supports it after the patient leaves your office.

Right now, we hand families a pamphlet and hope for the best. The 12 million Americans providing unpaid dementia care right now deserve better than hope. The nearly 4 million paid aides doing this work for wages that often do not cover their own rent deserve better than invisibility. And the patients they care for – your patients – will be the ones who benefit most when we finally treat this workforce with the seriousness it demands.

This means advocating for caregiver training to be embedded in every discharge plan, not as an optional add-on but as a clinical standard. It means supporting Medicaid HCBS funding as a matter of neurological care infrastructure. It means championing AI-powered training tools, career ladder programs, and wage reform, not because these are “nice to have” social programs, but because they directly determine your patients’ clinical outcomes.

America loves to say it values family. We love to say we honor our elders. We love to say we are preparing for an aging society.

Fine. Here is the simplest test: look at the biggest job in the country, the one keeping millions of households with neurological conditions functioning, and ask whether we are building it to last.

Because if the largest occupation in America is caregiving – and it is – then treating it as invisible is not just insulting but economically illiterate. And for those of us in health care, we have the power to fix this.

REFERENCES
1. Bureau of Labor Statistics. Occupational Employment and Wage Statistics, May 2024: Largest Occupations. U.S. Department of Labor. Accessed 2025. https://www.bls.gov/oes/current/largest.htm
2. Bureau of Labor Statistics. Occupational Outlook Handbook: Home Health and Personal Care Aides. U.S. Department of Labor. Accessed 2025. https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm
3. GBD 2021 Nervous System Disorders Collaborators. Global, regional, and national burden of disorders affecting the nervous system, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet Neurol. 2024;23(4):344-381.
4. 2025 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association. Alzheimers Dement. 2025;21(4):e70235.
5. Alzheimer’s Association. Alzheimer’s Disease Caregivers Fact Sheet. 2025. https://www.alz.org/help-support/caregiving
6.PHI. Direct Care Workers in the United States: Key Facts 2024. Bronx, NY: PHI; 2024. https://www.phinational.org/resource/direct-care-workers-in-the-united-states-key-facts-2024/
7. Bureau of Labor Statistics. In 2023, the majority of home health aides and personal care aides were women. The Economics Daily. U.S. Department of Labor. 2024.
8. Federal Register / Centers for Medicare & Medicaid Services. Medicaid Program: Long-Term Services and Supports. https://www.medicaid.gov/medicaid/long-term-services-supports
9. Mathematica. Trends in Users and Expenditures for Home and Community-Based Services as a Share of Total Medicaid LTSS Users and Expenditures, 2023. Centers for Medicare & Medicaid Services. October 2025.
10. Euhus R, Williams E, Burns A, et al. Allocating CBO’s Estimates of Federal Medicaid Spending Reductions and Enrollment Loss Across the States: House Reconciliation Bill. 2025.
11. Belle SH, Burgio L, Burns R, et al. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial (REACH II). Ann Intern Med. 2006;145(10):727-738.
12. Hepburn K, Lewis M, Tornatore J, Sherman CW, Bremer KL. The Savvy Caregiver program: the demonstrated effectiveness of a transportable dementia caregiver psychoeducation program. J Gerontol Nurs. 2007;33(3):30-36.
13. Shah NK. AI for Dementia Caregiver Training Could Reduce ER Visits and Transform Neurological Care at Home. NeurologyLive. 2025. https://www.neurologylive.com/view/ai-for-dementia-caregiver-training-could-reduce-er-visits-transform-neurological-care-at-home
14. Centers for Medicare & Medicaid Services. Guiding an Improved Dementia Experience (GUIDE) Model. https://www.cms.gov/priorities/innovation/innovation-models/guide
15. Maust DT, Wagner J, Zimmerman S, et al. The National Dementia Workforce Study: Overview. J Am Geriatr Soc. 2025;73(11):3318-3326.

Neal K. Shah is a health care researcher specializing in caregiving, workforce innovation, and artificial intelligence. He is an NIH-funded Principal Investigator on the YayaGuide AI for Caregiver Training project which he started at Johns Hopkins, and the co-Principal Investigator of the University of Pennsylvania's Counterforce Health AI project to help patients and clinics appeal health insurance denials. Neal also serves on North Carolina's Steering Committee on Aging. He is CEO of CareYaya, Chairman of Counterforce Health and the author of Insured to Death: How Health Insurance Screws Over Americans - And How We Take It Back.