Eilert Hinrichs, partner at L.E.K. Consulting, writes that today’s dementia sufferers cannot wait for tomorrow’s medicine.

The UK has just taken a genuinely important step in the fight against dementia. In July, the government, philanthropic foundations, and the pharmaceutical industry launched BARBARA (the Brain Ageing Registry for Biomarkers, Access to trials, Research and Adoption), a national “virtual registry” of people living with, or at risk of, dementia. Named in memory of Dame Barbara Windsor, who died with Alzheimer’s in 2020, and chaired by former health minister James Bethell, the platform consolidates around 180 separate research databases and population health studies into a single national resource.

This matters, and it deserves recognition. The UK’s dementia research assets are among the deepest in the world, built on decades of NHS infrastructure, academic biobanks, and population cohorts. Yet they have been fragmented across repositories that do not talk to each other and are largely invisible to the companies deciding where to run clinical trials. The consequence has been stark: only 173 people in England took part in late-stage, commercially sponsored Alzheimer’s trials between 2024 and 2025, and only roughly 2% of people diagnosed with dementia ever join a research registry. For a country of nearly 1 million people living with the condition, these numbers are indefensible.

Trial-ready pool

BARBARA addresses this directly. A pre-screened, trial-ready pool of participants changes the economics of clinical trials, as recruitment is one of the largest cost and time drivers in drug development. Combined with the rapid progress in blood biomarkers, which may soon identify the disease before symptoms appear, the registry could allow people to enrol in studies at a very early stage or even pre-diagnosis. There is also a hard commercial logic: trial-siting decisions follow patient cohorts, and cohorts follow infrastructure. After a bruising period for UK life sciences, including NICE’s initial rejection of lecanemab and donanemab on value-for-money grounds, BARBARA is a credible signal that the UK intends to compete for pharmaceutical investment.

So the research community is right to celebrate. My concern is what BARBARA is not, and what its prominence risks obscuring.

BARBARA is research infrastructure, not care infrastructure. It will help us understand dementia as a disease: how it progresses biologically, in whom, and how fast. However, as currently designed, it will tell us very little about dementia as a care need. The current design offers limited insight into dependency levels, behavioural and psychological symptoms, care settings, or the intensity of support people require. Adult social care data is absent, and in the UK, it barely exists in linkable form.

There is also a quiet selection effect. A registry built for trial recruitment will naturally attract people at the early stages of the condition who are able to consent and participate. People with advanced dementia and complex behavioural symptoms, the around 70% of care home residents living with the condition, will be largely invisible to it.

This is where the asymmetry becomes uncomfortable. Up to £150 million is expected to align with the Dame Barbara Windsor Dementia Goals programme under which BARBARA sits. Meanwhile, fewer than a third of England’s adult social care workforce has received formal dementia training. At the same time, local authority fee premiums for dementia care remain inadequate to fund the additional staffing and supervision that advanced dementia requires. As a result, providers are increasingly forced by financial reality rather than unwillingness to turn away those with the most complex needs. Ultimately, considerable sums are being invested in finding tomorrow’s patients earlier, whilst underfunding the care of today’s.

The two are not in competition, and it would be wrong to frame them as such. However, a serious national dementia strategy needs both legs. Even in the most optimistic scenario, disease-modifying treatments will arrive gradually, benefit early-stage patients first, and leave hundreds of thousands of people who will still live and die with advanced dementia in care settings over the next two decades. For them, the “breakthrough” is not a molecule. It is a trained workforce, dementia-appropriate environments, and funding that reflects the true intensity of their care.

Concrete action on care

Government should therefore match the ambition of BARBARA with equally concrete action on care: fee structures that genuinely reflect acuity, a funded workforce training commitment, and, crucially, investment in social care data. If we can consolidate 180 research databases, we can surely begin to systematically capture how dementia translates into care needs at different stages. Today, the best data on that question sits not in any national registry but with care providers themselves. Operators who capture residents’ cognitive and behavioural needs in a structured way hold an asset the national system lacks, and, as trials increasingly seek real-world evidence and diverse participants, they may yet become research partners rather than bystanders.

BARBARA is an important step, and the people behind it deserve credit. But finding a medicine for tomorrow must not become a substitute for funding care today. Dame Barbara’s legacy should be both.