Newcastle University

Dementia with Lewy bodies (DLB) is the most common cause of dementia after Alzheimer’s disease, yet it has long been under-recognised and frequently misdiagnosed. The condition – brought to public attention following the death of actor Robin Williams – causes fluctuating memory loss, movement problems, visual hallucinations and sleep disturbance, placing a profound strain on those affected and their families.

For more than three decades, researchers at Newcastle University have transformed how DLB is recognised and treated, redefining it as a common and distinct cause of dementia and reshaping care worldwide. The team identified key brain changes associated with DLB, helping to establish international guidelines for accurate and consistent diagnosis. They also pioneered dopamine-transporter (DAT) brain imaging as the global gold-standard test, greatly enhancing diagnostic confidence.

Using advanced brain imaging and post-mortem brain analysis, the team has linked biological changes in the brain to symptoms and progression – paving the way for earlier detection and more personalised care.

Their discoveries have also revolutionised treatment. Finding that levels of the brain chemical acetylcholine are severely depleted in DLB, the team led the first successful trials of treatments that restore its balance, which are now a worldwide standard therapy that improves thinking and reduces hallucinations. They also exposed the dangers of certain antipsychotic drugs, leading to safer prescribing practices globally.

Today, Newcastle’s researchers continue to lead the field, exploring disease mechanisms, developing stem-cell models, and investigating blood-based tests and personalised treatments to detect and manage DLB earlier and more effectively. Through close collaboration with patients, clinicians and scientists worldwide, their work has transformed DLB from an overlooked condition into a clearly defined, diagnosable and increasingly treatable disease – bringing hope to those affected and setting new international standards for dementia care.