GB News: Alastair Stewart announcing his dementia diagnosis
Blood tests to “revolutionise” the way dementia is diagnosed could be rolled out on the NHS within five years, experts say.
These biomarker tests identify the diseases that cause dementia by searching for minute fragments of proteins such as amyloid and tau, which build up in the brain.
Some are in the late stages of development and have been found to be 90 percent accurate compared to current gold-standard methods.
However, further research is needed to pilot their use in the NHS with diverse, real world populations and ensure that they are accurate, cheap, and can be widely used.
Charities Alzheimer’s Research UK and Alzheimer’s Society are launching a joint £5million drive to accelerate this vital work and bring a blood test to the NHS by 2029.
Promising blood tests need to be tested in real world populations
It comes at a crucial time, when the first disease-modifying treatments could be approved within months.
Those treatments will only benefit people with mild cognitive impairment or in the early stages of Alzheimer’s, making an early and accurate diagnosis more important than ever.
Dr Fiona Carragher, director of research and influencing at Alzheimer’s Society, said: “In the UK, we are a long way from a universal, early and accurate diagnosis of the diseases that cause dementia.
“The UK doesn’t possess adequate diagnostic infrastructure now or for the future, when we’re expecting a potential surge in demand for emerging treatment.
“We need to disrupt the diagnostic paradigm to prepare the system for the hope that’s coming in the future, and we believe that blood biomarkers provide a real opportunity to do this.”
Getting a diagnosis can help patients access support
Around 900,000 people are thought to be living with dementia in the UK – but an estimated 250,000 in England alone are undiagnosed.
People who notice worrying symptoms can be referred to a specialist memory clinic by their GP.
Lumbar punctures and PET scans are considered the gold standard for diagnosis. However, just two per cent of patients currently access these.
The UK has just 0.5 PET scanners per one million people, compared with 1.6-5.1 per million in countries such as France, Germany, Italy, Spain and the US.
Dr Joanne Rodda, a consultant psychiatrist at Kent and Medway NHS and Social Care Partnership Trust, has worked in memory clinics for 20 years.
She said: “I can count on one hand the number of people in the last six months who have had a lumbar puncture.”
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Blood tests for dementia could eventually replace PET scans and lumbar punctures, and may one day even be used by GPs, Dr Rodda said.
She added: “Certainly, I think perhaps within five years we will start to use these blood biomarker tests in our routine practice.
“It will need to be as part of a whole assessment, not simply a ‘yes’ or ‘no’ test.
“They will help us to make more specific, accurate diagnoses, at an earlier stage.”
A survey of 2,500 people for the charities found nine in ten would be willing to take a dementia blood test if it were available.
More than half said they would be reluctant to undergo a lumbar puncture – also known as a spinal tap.
Simon and Emma Ruscoe fought for four years to get his diagnosis
The charities will work with the National Institute for Health and Care Research to evaluate the most promising blood tests from across the globe. They will also consider whether multiple tests can be used in combination for greater accuracy.
Dr Susan Kohlhaas, executive director of research and partnerships at Alzheimer’s Research UK, said: “This is the last piece of research we need to do to get this over the line and to understand, what are the issues that need to be addressed in rolling this out?
“What’s the evidence? How cost-effective are these compared to normal gold standard methods that we currently use? In order to make the case for these to be rolled out.”
Work on the Blood Biomarker Challenge will begin in January.
A Department of Health and Social Care spokesperson said: “We know that early diagnosis of dementia is vital, which is why we’re committed to improving diagnosis rates and access to potential new treatments.
“We are doubling the funding for dementia research to £160 million a year by 2024/25 and – through the National Institute of Health and Care Research – will be closely evaluating this research project.
“The most effective way to support early diagnosis is to deliver on our priority to cut waiting lists and we have opened 127 community diagnostic centres across the country which have delivered over five million additional tests, checks and scans.
“Our Major Conditions Strategy will also set out the standards patients should expect at all stages of dementia care.”
The Ruscoe family finally received support after the diagnosis
‘I knew something was wrong and battled for so long.’
Simon Ruscoe and his family endured a four-year battle before he was finally diagnosed with young-onset dementia.
He visited his GP in 2016 after his wife Emma and their two sons noticed he had become forgetful and irritable during a family holiday.
The doctor referred him to a memory clinic but the specialists refused to see him.
When Simon, 59, was finally seen two years later following a second referral, his symptoms were dismissed as stress after limited investigation, Emma said.
It took a third referral and 40-week wait for another appointment for him to finally be told he had dementia.
Emma, 55, said: “When Simon received his diagnosis, I felt a sense of relief. I knew something was wrong and I was battling for so long.
“If a blood test had existed, it would have saved a lot of heartache. The uncertainty was really hard to deal with as a family.”
Simon now has difficulty completing simple tasks such as making a cup of tea, and sometimes struggles to recall his loved ones’ names.
Emma said his diagnosis had helped the family, of Solihull, access support from Alzheimer’s Society.
She added: “People are frightened of getting a diagnosis because there’s no cure.”
Everybody with dementia deserves a diagnosis and the support, treatment and care this can bring.
But we know that right now, over a third of people living with dementia in England are undiagnosed, left to cope alone with symptoms that could potentially be treated, and at risk of ending up in crisis.
For those lucky enough to get a diagnosis, it can be an emotional and frustrating process, with many waiting too long to be finally told they have dementia.
We wouldn’t accept this for any other condition, but dementia just isn’t the political priority it needs to be.
Now, thanks to £5 million funding from the People’s Postcode Lottery, we’ve got the chance to completely transform dementia diagnosis by making blood tests on the NHS a reality.
We’ve seen these tests work in the lab – now is the time to find out if they work in the real world, among different ages, genders, and ethnicities.
With new drugs for Alzheimer’s on the horizon, it’s more important than ever that we’re able to diagnose people in the earliest stages of the disease, and to know exactly which type of dementia they have.
This transformation in dementia diagnosis is not just needed to help people today, but to provide hope for tomorrow.
– Fiona Carragher is director of research and influencing at Alzheimer’s Society