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Massive data study offers hope for early dementia diagnosis

Shaheen Larrieux wearing a device that tracks her physical data. Source: AP

Scientists are starting a global data study of wearable technology to see if they can detect what causes dementia ten to fifteen years before symptoms appear.

For more than ten years dementia has cast a shadow of Shaheen Larrieux's life. In 2017 her father died after being diagnosed with vascular dementia, but far more painful is Ms Larrieux's experience with her mother's more rare frontal temporal dementia. Ms Larrieux, a chemical engineer, gave up work to care for her mother. 

"She would ask me to help support her in everyday tasks like banking checks, things that she had done throughout her whole life with no problem. And one of the things with young onset dementia is affects the people around the person before the person themselves. So my mum was very aggressive. She had personality changes and I found it very, very difficult to deal with. So I spent a number of years feeling quite deeply depressed myself."

Despite numerous trips to the doctor, Ms Larrieux's mother wasn't properly diagnosed for years - until 2011.

"I was relieved. I had spent more than a decade working in darkness, getting upset by my mum's aggressive behaviour towards me, her meanness towards me and having many, many unresolved arguments. So when I got a diagnosis, I was so, so, so relieved that finally I understood what was wrong with my mum."

Shaheen Larrieux is among many who are hoping the new data study launched by Alzheimer's Research UK, the Turing Institute and numerous other organisations will finally lead to doctors being able to diagnose dementias well before they do physical damage.

Research scope

Physicians believe some of the dementia drugs which aren't effective now, are given too late.

The belief is that they may be far more effective in delaying dementia if patients are given the drugs before the disease has had a chance to do irreversible damage to the brain.

Wearable technology such as smart watches are already collecting vast amounts of data about our lives - heart rates, how much exercise we're taking, how much sleep we're getting and so on.

The Research Director for Alzheimer's Research UK, Carol Routledge says they want to harness that data and create a massive bank of information which artificial intelligence can use to make predictions.

"So we want to carry on collecting clinical information. We want to carry on collecting digital information over a long period of time. And then we want to put the entirety of this data together for a number of different reasons. So first of all, we want to try and understand which digital measures are most clinically relevant. And then when you put all of those digital measures together, which ones are required for to be able to detect diseases, on a disease specific basis."

In the first wave they'll be using data from 100,000 existing devices of people at high risk of dementia.

The aim is to accelerate this to a study enrolling up to a million people who provide researchers with biological samples as well as consenting to the use of their data.

This is data collection on a vast scale. Scientists say in the final analysis they will use A-I to identify patterns which reveal the very earliest stages of dementia like Alzheimer's.

Dementia affects more than 50 million people worldwide and it is now Australia's second leading cause of death.

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