My father fought a noble but unequal battle against Parkinson’s disease. As we drove home on a rainy afternoon from a failed application to a promising clinical trial, he told me that he would cut off his right arm to have one year of life without dementia. It broke my heart to hear this great man humbled by this horrible disease.
Twenty years ago, it frustrated me that we just did not have the treatments or even the ambition to answer my father’s prayer. Prime Minister Andy Burnham put it plainly at the launch of the BARBARA Alliance on October 9, 2026: “For too long, we have accepted dementia as something to be managed later in life, rather than a disease we can defeat.”
But that has changed. Science has progressed massively. Solutions are in sight.
It is clearly time to bootstrap the dementia clinical trial capabilities of the country.
The treatments are on the tarmac, ready to go. Jeffrey Cummings counted 158 treatments across 192 clinical trials in the global Alzheimer’s pipeline in 2026. We are right to feel optimistic.
The problem is, our patients are ready, but the system is not. They just cannot get access to treatments. Regulators are unpersuaded by the new drugs. And we are struggling to find the resources to demonstrate how effective treatments can be delivered, safely and economically.
Somehow, the clinical trial system is gummed up. Despite the long queue of treatments looking for validation, just 173 people with Alzheimer’s took part in late stage, commercially sponsored trials in England between 2024 and 2025. It is a huge national shame. The same challenge faces many other countries.
There are reasons for this. There is a frustrating chicken-egg problem: a lack of effective treatments and approved clinical pathways means there are few incentives to invest in new diagnostics. As a result, the only patients with a clear diagnosis tend to have advanced disease.
The infrastructure needed to support a dementia trial industry—with its specific demands for the relevant clinical histories, scans, blood samples, and doctors’ notes—is not mature enough to support a national mission to find a cure. Pharmaceutical and biotech companies with promising dementia treatments and diagnostics just cannot find the participants with the necessary clinical records and data to complete their trials. Trials falter too frequently, dispiriting investors. So they move to other, more productive fields.
But that is changing. Companies can sense opportunities on the horizon. There is a strong sense of opportunity in the air. Lecanemab (Leqembi) and donanemab (Kisunla) are icebreakers priming market interest, but there’s a stack of drugs coming behind them. It is clearly time to bootstrap the dementia clinical trial capabilities of the country.
On this, there is good news. A collective determination to break through this bottleneck has brought together a remarkable public-private alliance of pharma companies, social investors, regulators, clinical trial networks, academic researchers, and the health system. The BARBARA Alliance, the research data charity I chair, is the vehicle for this collaboration to crack the dementia clinical trial data nut. It will link the UK’s health data, research, and trial capabilities so researchers can find participants faster and bring the latest treatments to patients earlier.
It’s a pioneering project, not without risks. But it enjoys the emphatic support of Prime Minister Burnham, who has made dementia the centerpiece of this government’s priorities. He announced a £48 million partnership for this project—the government puts in £33 million through the Dame Barbara Windsor Dementia Goals program, and commercial partners (Bristol Myers Squibb, GSK, and the Gates Ventures fund) put in the rest. The announcement named Kaivan Khavandi of GSK, Ken Rhodes of Bristol Myers Squibb, and Niranjan Bose of Gates Ventures. It’s hugely encouraging.
The prime minister has set the goal, and industry has funded the platform. I am hopeful that this style of public-private partnership will create a template for kick-starting clinical trials in other neglected areas, such as mental health and respiratory diseases. And I hope that other countries struggling with this knotty issue will look at what Britain is pioneering and find some inspiration from our efforts.