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Nigel Hullah, dementia research advocate, champions collaborative DPUK datathons to improve the lives of people with dementia.

Two participants at a DPUK datathon discuss their ideas. © Population Data Science at Swansea University

Nigel Hullah gave the keynote speech for the scientists who are innovating at the very forefront of dementia research.

Nigel is already a well-known activist for the rights of those, like him, who live with dementia. As Chair of the 3 Nations Working Group for Dementia, he advises at a high strategic level to the Welsh government. However, being on the ground with dementia researchers is new for him. At the Swansea event, the researchers are tackling an issue that Nigel sees as the start of improving lives of people with dementia: diagnosis.

“We need a consistent research-based approach to improving the lives of people who are living with dementia, and early diagnosis and intervention is where it starts. If we diagnose earlier, if we understand the most effective therapies earlier then we get more people on the right path so they can live better for longer.

With dementia set to triple by 2050, scientists are looking for ways to accelerate and innovate dementia research so that the disease can be diagnosed much earlier and prevented from progressing. Datathons provide a safe space where dementia researchers and data scientists can collaborate and answer some of the most pressing research questions on dementia. The datathon in Swansea will see data scientists from a whole range of different backgrounds come together to innovate on one of the most intractable problems for dementia researchers today – namely how to identify the earliest signs of the disease.

Researchers use machine learning techniques and other traditional statistical methods to uncover hidden patterns in cohort data that might identify those at risk of developing dementia, or indicate promising areas for research into treatments.

Despite decades of research since the discovery of the Alzheimer’s in 1900 there have been no significant advances in treatment for the disease. Many of those living with dementia find that completely fresh approaches to research is what offers them hope – the innovative approach at the Swansea datathon is what’s particularly exciting.

“Research is the hand of hope. I want to see new approaches new techniques like this because I know personally, and through all my work since my own diagnosis – there is no time to lose. We need to see creativity and innovation in the research, to improve the diagnostic rates and understanding of the best treatments.”