Drug that reverses dementia will be wasted without better diagnosis rates, experts warn

An MRI image of brain - GSO Images/The Image Bank RF
An MRI image of brain - GSO Images/The Image Bank RF

The first drug to reverse dementia will be a wasted opportunity unless Britain dramatically improves diagnosis rates, experts have warned.

Next week, trials are expected to show that injections of lecanemab can significantly reduce the progress of the disease and decrease memory decline.

Scientists have already hailed early results as a “historic moment” after the drug was shown to cut the progress of the disease by 27 per cent.

But there are fears poor diagnosis rates - which have fallen dramatically since the pandemic - mean that thousands of people who could benefit will never get the drugs.

Official estimates show just 62 per cent of cases in England are diagnosed, down from 67.4 per cent in February 2020.

The difference means about 32,000 extra people have missed a diagnosis.

And even those who are diagnosed, are unlikely to get the types of scans that are required to see if a person could benefit from lecanemab.

Writing in The Telegraph, Dr Richard Oakley, Associate Director of Research at the Alzheimer’s Society, said:  “Next week we’ll see full clinical trial results published in the US for two Alzheimer’s disease drugs, lecanemab and gantenerumab, while there are 141 other drugs for Alzheimer’s disease also currently being tested.

“Lecanemab is the one to watch next week, with top-line study results showing a significant reduction in cognitive decline in the early stages of Alzheimer’s disease, strongly suggesting that we’ve found a promising route to slow down deterioration in thinking and memory skills.”

“To be eligible for lecanemab treatment, people need to be in the early stages of Alzheimer’s disease and have amyloid protein build-ups in their brains.”

“Without even knowing the cost of rolling out this drug, we’re already up against three barriers in the UK. First, diagnosis rates are at a five-year low in the UK and stagnating.

“Second, variation in dementia diagnosis guidelines across the UK means that some people could be diagnosed with Alzheimer’s disease without a clinician confirming if that they have amyloid in their brain, and would therefore benefit from a drug like lecanemab.”

“Third, the UK’s access and availability of brain scanning equipment languishes at the bottom of international tables,” he writes.

The latest published data shows that as of 2019, Britain had just 70 PET-CT scanning locations, less than half the number of those available in comparable EU countries.

A 2021 audit highlighted that just 76.9 per cent of memory services could refer people for PET scans and 44 per cent for CSF tests, which look for amyloid protein in the fluid surrounding the brain and spinal cord.

“We need everyone to be told which disease is causing their dementia symptoms, and if they have Alzheimer’s disease, a follow-up scan or CSF test to check if they are amyloid positive must be mandatory.”

We’re on the cusp of breakthroughs in slowing down Alzheimer’s disease – but thousands could miss out if the NHS isn’t ready

Dementia is one of the biggest health challenges facing the planet, robbing people of their memories, thinking skills and independence, but we don’t have a single treatment in the UK to stop its progression, let alone a cure. Alzheimer’s Society research shows around a third of people put off getting a dementia diagnosis for two years because they didn’t want to know or were in denial about their symptoms. It can be hard to see the benefit of a dementia diagnosis without treatments to stop it getting worse, writes Dr Richard Oakley, associate director of research at the Alzheimer’s Society.

But finally we are on the cusp of major breakthroughs in dementia research, meaning that for Alzheimer’s disease at least, we could have drugs available in the next few years which can slow down the disease and give people months or even years more quality time with their loved ones.

Next week we’ll see full clinical trial results published in the US for two Alzheimer’s disease drugs, lecanemab and gantenerumab, while there are 141 other drugs for Alzheimer’s disease also currently being tested. Lecanemab is the one to watch next week, with top-line study results showing a significant reduction in cognitive decline in the early stages of Alzheimer’s disease, strongly suggesting that we’ve found a promising route to slow down deterioration in thinking and memory skills.

In the UK we have a proud part to play in this longed-for breakthrough, as it was the Alzheimer’s Society’s first research study in 1989, led by Sir Professor John Hardy at UCL, which showed that a toxic protein called amyloid – which both lecanemab and gantenerumab target - is one of the major players in the causes of Alzheimer’s disease.

We’ve come so far since this seminal research, but if lecanemab is to be approved for use in patients in the UK, there are still huge hurdles to jump over to be able to give this drug to people living with Alzheimer’s disease.

Fundamentally, to be eligible for lecanemab treatment, people need to be in the early stages of Alzheimer’s disease and have amyloid protein build-ups in their brains.

Without even knowing the cost of rolling out this drug, we’re already up against three barriers in the UK. First, diagnosis rates are at a five-year low in the UK and stagnating. We know many people brush aside their symptoms for too long – up to a quarter wait two years after noticing symptoms - and when they do seek help, they sit on diagnosis waiting lists for weeks or months, unable to get the answers they desperately need to get crucial support. This means that, unless we address these barriers, even when people do get a diagnosis, it may already be too late for them to access this life-changing drug.

Second, variation in dementia diagnosis guidelines across the UK means that some people could be diagnosed with Alzheimer’s disease without a clinician confirming if that they have amyloid in their brain, and would therefore benefit from a drug like lecanemab.

There are more than 100 diseases that cause dementia. We wouldn’t accept a top-line diagnosis of ‘cancer’, and yet some doctors are handing out diagnoses of ‘dementia’, leaving patients in the dark about which disease of the brain is causing their symptoms.

Third, the UK’s access and availability of brain-scanning equipment languishes at the bottom of international tables. As of 2019, there were just 70 PET-CT scanning locations in the UK, less than half the number of those available in comparable EU countries. A 2021 audit highlighted that just 76.9% of memory services could refer people for PET scans and 44% for CSF tests, which test for amyloid protein in the fluid surrounding the brain and spinal cord.

And for those who did get these extra tests, three out of five hospital trusts recorded waits of over two months. We need everyone to be told which disease is causing their dementia symptoms, and if they have Alzheimer’s disease, a follow-up scan or CSF test to check if they are amyloid positive must be mandatory.

While clinical trials to test disease-modifying drugs like lecanemab are ongoing, the Alzheimer’s Society is funding research into making diagnosis quicker, earlier and cheaper. Blood tests, which look for biomarkers or "red flags" in the blood to suggest if a person has Alzheimer’s disease or another type of dementia, could be so easy to incorporate into a general check up in a GP surgery. AI to process brain scans quicker could allow clinicians to follow up with people more quickly, reducing an agonising wait for scan results.

But research takes time and money. Dementia has been chronically underfunded and deprioritised compared to other medical conditions, with over eight times as many clinical trials underway in cancer compared to dementia in 2022-2023. A fatalistic attitude that there’s nothing we can do to improve people’s quality of life is holding us back from making breakthroughs. We urgently need the Government’s promised National Dementia Mission – to double dementia research funding in the UK – to prioritise early diagnosis through improved access to brain scans and CSF testing and research to get blood tests into the clinic.

So what can we do in the meantime, for those people who have another type of dementia and who may well feel left out of the "breakthrough" moment next week; as well as the many thousands of people for whom these drugs are too late? Our social care system is on its knees, and three in five people with dementia told us they didn’t receive enough support in the last year. Tackling dementia isn’t just a medical issue, it’s a societal and social care issue.

Research will beat dementia. I truly believe that one day we can transform it from a top 10 killer to a chronic condition that can be managed. But we need a concerted effort to prepare our health systems to accept disease-modifying drugs when they’re here – chiefly by tackling the systemic problems in diagnosis – but also a push to find treatments for all diseases that cause dementia so game-changing treatments could be on the cards for everyone.