Congress appropriated $41.5 million this fiscal year for the CDC to run its two main public health programs for Alzheimer's and dementia. The federal employees who administered those programs were cut or placed on leave during the agency's restructuring, and the money now goes to state and local recipients without the agency staff who once guided how it was used.
That combination, money without people, is the part of the federal health workforce story that has been hardest to see. Layoffs generate headlines. A funded program that quietly stops functioning does not, because on paper it still exists.
For households, the effect is indirect but real. The programs in question exist to help state and local health departments improve early dementia detection, reduce risk, and support the roughly 12 million unpaid family caregivers who do most of the work of dementia care in this country. When federal support thins, that work falls back on states with uneven capacity and on families with none.
The Money Is There, and the Staff Are Not
The fiscal 2026 spending package enacted early this year included $41.5 million for the CDC to implement the BOLD Infrastructure for Alzheimer's Act, the highest annual investment since the law was enacted. BOLD and the companion Healthy Brain Initiative fund public health centers of excellence and grants to state, local, territorial, and tribal health departments. The CDC currently funds 43 such recipients under a five-year cycle running through 2028.
Staff for both programs were placed on administrative leave during the reduction in force at Health and Human Services in April 2025. The Alzheimer's Association warned at the time that the action could undermine the national dementia response, noting that the programs had been unanimously reauthorized by Congress and calling them "critical to Alzheimer's/dementia awareness and brain health."
More than a year later, the gap persists. As reported by the Associated Press, the agency still has an Alzheimer's initiative funded for surveillance, risk prevention, and communications campaigns, with no one staffing it. Work that stalled includes a planned public webpage explaining what is known about a possible link between menopause and Alzheimer's risk. Because of ongoing litigation, many staffers who received layoff notices remain on administrative leave, paid but not permitted to work.
Erika Sward, chief advocacy officer for UsAgainstAlzheimer's, told the AP that without the agency's experts, "the coordination is not there across the country."
Not everything has stopped. Most of the CDC's budget passes through to state and local programs, and grant processing has largely continued. The agency also posted a new funding opportunity in late spring for the National Healthy Brain Initiative, the BOLD centers of excellence, and a new adoption accelerator, with a $35 million ceiling, seven expected awards, and applications closing in June. What is missing is the layer in between: the specialists who evaluated which funded approaches worked, provided technical assistance, and set a national framework.
The Wider Pattern
The dementia programs are not an isolated case. Current and former CDC employees have compiled a list of funded but decimated programs that includes the Office on Smoking and Health, which received $246 million, an $18 million tribal overdose prevention program, an $11 million epilepsy program, a $6 million sickle cell disease data operation, a $2 million drowning prevention program and the Pregnancy Risk Assessment Monitoring System, the country's most comprehensive collection of data on health before, during and after childbirth.
Congressional appropriators appear to have noticed the mismatch. The fiscal 2026 bill added a provision requiring HHS to maintain staffing levels necessary to fulfill its statutory responsibilities, though it does not specify how many people each program needs.
Democratic lawmakers argue that the arrangement violates the Impoundment Control Act of 1974, which was passed after President Richard Nixon refused to spend appropriated funds. There is no enforcement agency for that law, and with Republicans controlling both chambers, there has been limited appetite for Congress to press the issue.
The agency now has a Senate-confirmed director for the first time in roughly a year. MedicalDaily reported on Erica Schwartz's confirmation earlier this month. At her confirmation hearing, Senator Tim Kaine pressed her on restarting the dormant smoking office, and she replied that she would always follow the law. Senator Jon Ossoff, who represents Georgia, said afterward that "We will learn swiftly whether she intends to follow the law."
What Cannot Be Concluded Yet
Nothing in the available record establishes that a specific case of delayed dementia diagnosis resulted from these staffing gaps. That link has not been demonstrated and should not be asserted.
What is documented is narrower and still consequential. Money appropriated by Congress for a named purpose is reaching recipients who no longer have federal subject-matter support, and advocacy groups and former staff say so on the record.
It is also fair to note the counterargument. HHS has consistently framed the restructuring as an efficiency measure and says response capacity remains intact. Grant funds still reach state and local recipients, and public health work does not stop when a federal program officer's position is eliminated. Whether it is done as well is the open question.
There is a reason this matters more for dementia than for some other conditions. Diagnosis is frequently delayed, often by years, and the delay is worse in rural areas and among Black, Hispanic, American Indian, and Alaska Native adults, populations the centers of excellence were funded to reach. Public health infrastructure is what turns clinical guidance into something a county health department can actually deliver.
Families dealing with dementia should not change anything based on this report. The practical entry points are unchanged: a primary care clinician for cognitive concerns, the Alzheimer's Association helpline at 1-800-272-3900 for around-the-clock support, and the local Area Agency on Aging for caregiver respite, adult day programs, and benefits counseling. Medicare covers an annual wellness visit, including a cognitive assessment, at no cost.
The next test is administrative. Whether the new awards are made and staffed, and whether Congress funds BOLD again in the coming cycle, will show whether the current arrangement was a transition or a quiet ending.
Key Questions Answered
What is the BOLD program? The Building Our Largest Dementia Infrastructure for Alzheimer's Act directs the CDC to strengthen public health capacity on dementia, focusing on early detection and diagnosis, risk reduction, and caregiver support. Congress reauthorized it unanimously.
How much money is involved? The fiscal 2026 spending package included $41.5 million for BOLD and the Healthy Brain Initiative at the CDC, the highest annual amount since the law was enacted.
What happened to the staff? CDC employees supporting both programs were placed on administrative leave during the 2025 reduction in force. Published accounts report that the program remains funded with no one staffing it.
Does that mean grantees lost their funding? No. The CDC funds 43 state, local, territorial and tribal recipients, and a new funding opportunity was posted this year. What is described as lost is federal technical assistance and expert guidance.
Has this caused documented harm to patients? No such link has been established, and none should be assumed. What is documented is a gap between appropriated funding and the staff available to administer it.
Where can families affected by dementia get help now? A primary care clinician for cognitive concerns, the Alzheimer's Association helpline at 1-800-272-3900, and the local Area Agency on Aging for caregiver support and benefits counseling.
What happens next? Lawmakers have signaled they are watching whether the new CDC director restarts funded programs, and the next appropriations cycle will determine whether the programs are funded again.
