On Monday, March 24, Charles DeCarli was instructed by the federal government to halt his nationwide dementia study. As the head of the University of California, Davis’s Alzheimer’s Disease Research Center, which benefits from federal funding, DeCarli focuses on the vascular risk factors, including diabetes and high blood pressure, that account for 15 to 25 percent of dementia cases. These factors are not well understood, and currently, there are no treatments approved by the Food and Drug Administration that specifically address them.

DeCarli had been worried for several weeks as the Trump administration had been hinting at cuts to research funding, particularly for projects related to DEI (diversity, equity, and inclusion). “The title of our study includes the word ‘diverse,’ which had me a bit worried about becoming a target,” DeCarli mentioned. Vascular dementia risk factors disproportionately impact certain demographic groups, such as Black and Hispanic or Latino Americans. Researchers at 28 locations across the country were racing against time to enroll the majority of their study participants by September.

Then, they received shocking news from the National Institutes of Health: their nearly $36-million grant, given during the first Trump administration, was being revoked. The justification cited was that the study no longer aligned with agency priorities and was based on “artificial and non-scientific categories,” according to the notification letter. The team was left scrambling to figure out what to do with hundreds of thousands of blood samples that were awaiting analysis and had to inform participants that their appointments were canceled.

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After a period of uncertainty, the NIH reversed its decision and reinstated the project’s funding last Friday following an appeal from DeCarli. “It’s like having a fire in your store. It doesn’t completely destroy the shop, but now you need to take stock, order new supplies, repaint the interior, and hope your customers return,” he explained. Currently, DeCarli is concerned that the team will fall short of its enrollment targets, necessitating a reevaluation of the study.

This incident highlights the broader impact of funding disruptions on scientific progress. Such interruptions are occurring at Alzheimer’s Disease Research Centers (ADRCs) nationwide. Out of the 35 NIH-funded centers, 14 are in a state of uncertainty because their funding is set to expire on April 30 and has not been renewed. These centers include some that house brain banks donated by individuals who suffered from dementia. In a sweeping move targeting Columbia University, the Trump administration has reportedly revoked $3 million in grants to the university’s own ADRC, which is dedicated to exploring the causes of Alzheimer’s disease.

Scientific American discussed with DeCarli the implications these funding disruptions could have on our understanding of dementia and the development of new treatments.

[An edited transcript of the interview follows.]

What’s the current outlook for your study now that the funding has been restored?

“I’m now focused on saving the study,” DeCarli said bluntly. Notifying 1,700 participants that the study was canceled, only to invite them back, is challenging. “It’s likely we won’t meet our recruitment goals. We’ll have to reassess the scientific aspects because if we don’t reach our target, we won’t see the longitudinal effects we anticipated, diminishing our return on investment. It’s a tough situation, but we’ll make the best of what we have,” he added.

This event will have lasting repercussions, instilling fear and uncertainty in those involved in this and other studies.

What is the situation at other Alzheimer’s Disease Research Centers?

“All the centers undergo a staggered three-year review cycle. We’re currently in the middle of one of these cycles for more than a dozen of the 35 research centers. The reviews are complete, but the NIH has yet to act on renewing the funding. Thus, some centers are facing an imminent end to their funding on April 30 without knowing their future status,” DeCarli explained.

How does this uncertainty impact the efforts to understand dementia’s causes and develop new treatments?

“The instability affects multiple aspects of our work. Some research projects might never be completed. They get off track and can’t recover, and thus the work remains undone. Our participants may lose faith in our reliability. Additionally, future researchers, the ones who bring fresh ideas and innovations, might not make it,” DeCarli said. “Moreover, the unity within the network of universities, such as Columbia, the University of Pennsylvania, Harvard, and Yale—all of which have ADRCs—is crucial. Like any network, if one node fails, it can impact the entire system.”

What could this mean for individuals, like those in my family, who see dementia as an imminent threat?

“Any delays in research can postpone discoveries. It’s similar to cancer research; significant progress has been made in diseases that previously claimed many lives. The same is true for dementia. But the more barriers we face, the longer it will take to achieve breakthroughs. It might still happen, but it could be delayed by decades,” DeCarli noted.

“However, we remain hopeful that we can broaden our understanding of the various biological pathways that lead to dementia—not just those linked to Alzheimer’s. The more we learn, the better we can understand brain health and develop targeted interventions. Ultimately, our goal at our ADRC is to ensure a lifetime of brain health for everyone,” DeCarli concluded.