Call for network of brain health clinics to ‘revolutionise’ dementia care

The NHS has been urged rapidly build a national network of brain health clinics to revolutionise dementia care and improve “completely unacceptable” diagnosis rates.

The world has reached a “tipping point” in the battle against the devastating condition and the first drugs to slow its march could be approved in Britain as early as January.

But one in three people with dementia does not receive a formal diagnosis, meaning thousands are on track to miss out.

Alzheimer’s Research UK is now seeking manifesto pledges from party leaders in the run-up to the next election.

A major report from the charity sets out a roadmap to ensure we can finally “start to ease some of the fear, harm and heartbreak”.

Its recommendations include the roll-out of a national network of specialist clinics. These would diagnose people early and help them access new drugs or treatment trials. They could also identify individuals at highest risk of developing dementia and offer advice on prevention.

Twelve brain health clinics are operating through projects in England and ARUK wants to see 30 more, so there is one per integrated care board.

Samantha Benham-Hermetz, ARUK’s executive director of policy and communication, urged action to “ensure dementia does not remain a death sentence for those it touches”.

She said: “For people living with dementia to receive proper treatment – including the new drugs currently being looked at by regulators – they need to receive a formal diagnosis.

“But in England, we know that more than a third of over-65s living with dementia never get a diagnosis at all. This is completely unacceptable, as is the underlying diagnosis target of 67 percent.

“We wouldn’t accept this for any other condition, so we shouldn’t for dementia.”

Patients who see their GP with possible symptoms of dementia can be referred to a memory clinic or hospital for further tests.

But experts say more specialised centres are needed. The proposed network could also be used to launch national clinical trials of promising innovations, such as blood tests that search for early signs of dementia.

ARUK warned that limited availability of testing and reluctance of some doctors to offer a diagnosis had created a postcode lottery.

Just 53 percent of people living with dementia in Herefordshire and Worcestershire will be diagnosed, compared to 73 percent in South Yorkshire.

Other recommendations include improving access to advanced diagnostic tests – at the moment, only one in 50 people can access PET scans or lumbar punctures.

The report calls for a tenfold increase in the number of NHS lumbar punctures – also known as a spinal tap – to 20,000 per year.

ARUK also wants to see a £16 million investment in diagnostic infrastructure, equipment, and workforce training, including 50 new nurses across the UK.

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Urging party leaders to pledge to improve dementia care ahead of the next election, Ms Benham-Hermetz added: “This isn’t about winning over voters with warm words.

“It’s about committing to tangible actions that will ensure we have a future where there is a cure for dementia, and where people can be free from the fear and heartbreak of this devastating condition.”

Around 900,000 people are thought to be living with dementia in the UK. It remains the nation’s biggest killer and is on track to be the most expensive health condition by 2030.

The imminent arrival of the first new drugs for dementia in 20 years means there is no time to spare. Lecanemab and donanemab are the first proven to both slow cognitive decline and clear toxic proteins from the brain. They have been approved in the US.

Estimates suggest up to 720,000 people could be eligible for the new therapies in the UK.

Clinical trials expert and ARUK trustee Divya Chadha Manek was honoured with an OBE in 2021 for playing an instrumental role on the Covid Vaccines Taskforce.

She said: “I’ve seen first-hand how clinical research in the UK delivered life-changing discoveries to the rest of the world. I know we can do this for dementia.

“By prioritising action on dementia, there is a significant opportunity for policy makers to improve societal wellbeing and lifelong health, reducing the burden on our NHS and most importantly, building a legacy where people with dementia no longer have to suffer. It’s time for decision-makers to listen and take action.”

Meanwhile, global federation Alzheimer’s Disease International (ADI) has called on governments to step up prevention efforts.

It estimated that 1.5 million people will be living with dementia in the UK by 2050, but more than 630,000 cases could be avoided.

Research has shown that 40 percent of diagnoses could be prevented by addressing risk factors such as obesity, smoking, high blood pressure and air pollution.

ADI’s CEO, Paola Barbarino, said: “Even though new treatments are now on the horizon, they will not be instantly available or suitable in the majority of cases.

“As we now know a lot more about reducing the risk of developing dementia, this is one of the best ways to tackle the escalating numbers. There’s clear evidence that demonstrates pre- and post-diagnosis risk reduction works.”

A spokesperson for the Department of Health and Social Care said the Government was committed to improving diagnosis rates and access to new treatments.

They added: “We are doubling the funding for dementia research to £160 million a year by 2024/25 to accelerate the development of the latest treatments and technology. Our Major Conditions Strategy will also set out the standards patients should expect at all stages of dementia care.

“But the most effective way to support early diagnosis is to deliver on our priority to cut the waiting lists – we have opened 114 community diagnostic centres across the country which have delivered over four million additional tests, checks and scans since July 2021.”

Grandfather’s eyesight troubles were caused by rare form of dementia

Graham Leek visited his GP repeatedly over two years before finally receiving a diagnosis. He had experienced problems with his eyesight and becoming dizzy or disorientated while out walking.

Tests in 2014 eventually revealed he had a rare form of dementia called posterior cortical atrophy. Graham’s son Tim, 40, said: “Watching dad not be himself was heartbreaking, and to not have the answers as to why it was happening made it all so much harder.

“Dad’s initial problems were with his eyesight, and it took the GP a long time to realise the problem was rooted in his brain.

“Even after that realisation was made, it still wasn’t made clear to us what was going on. We’d never even heard of posterior cortical atrophy or its link to dementia.”

Tim, from Kent, now fundraises for Alzheimer’s Research UK to support the drive for more research into dementia.

He added: “Every person in the UK who has or is at risk of developing dementia should have the right to know the disease that’s causing their dementia, and to be diagnosed early enough to make the biggest difference.

“Given the scale of the challenge, dementia must be a top priority for all governments.”

What is a brain health clinic?

Brain health clinics are a new healthcare model that aims to diagnose the diseases which cause dementia earlier and with more accuracy. They can also offer advice on reducing risk and boost access to research trials.

There are 12 currently operating in England, each set up separately and funded by research organisations and local NHS bodies.

The Oxford Brain Health Clinic, at Warneford Hospital, was the first to launch in 2020. Patients referred there with memory problems can access assessments that are not routinely available, including more detailed MRI scans.

The clinic is also working to increase participation in clinical research by streamlining the sign-up process and making it easier for people to take part.

A pilot showed the project was hugely successful, with 94% of patients consenting for their data to be used in research.

Consultant memory clinic appointment times were reduced from 75 to 45 minutes, and medics reported feeling more confident in the accuracy of their diagnoses.

ARUK is calling for a national rollout that would see 30 more brain health clinics opened across the country – a total of 42, or one for every integrated care board.

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