NHS warned of surge in people wanting dementia diagnosis as new drugs offered

The NHS has been urged to prepare for a surge in people needing dementia diagnoses, after a survey found half would be more likely to seek help if they had symptoms when new treatments are available.

Breakthrough drugs lecanemab and donanemab are the first proven to slow Alzheimer’s and could be approved for use in the UK early next year.

They can buy patients precious extra months before their brain health declines – but must be given in the early stages of disease.

Leading charities fear the NHS is not diagnosing people early enough to reap the full benefits.

Dr Susan Mitchell, head of policy for prevention, early detection and diagnosis at Alzheimer’s Research UK (ARUK), said: “We currently only diagnose two-thirds of people who are developing dementia.

“I’m really glad that more people want to come forward but we need to make sure the system is ready because it’s not in a great state now.

“It’s not diagnosing enough people, quickly enough, so this is a salient reminder of the need to take action.”

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Getting a diagnosis can lead to opportunities to participate in research trials and support to plan for the future.

But until now, some patients – and even doctors – have seen the benefits as limited because there were no treatments that could slow progression.

A survey for the Daily Express found 89% of 2,000 people agreed it was important to receive a diagnosis as soon as possible.

However, only 81% said they would seek help immediately if they noticed symptoms in themselves or a loved one.

The research, carried out by OnePoll last month, found 51% of adults said they would be more likely to seek a diagnosis if they had symptoms once new medicines were rolled out.

More than 900,000 people are thought to have dementia in the UK and the figure is rising.

Estimates suggest as many as 720,000 could benefit from the new drugs, which are said to have a “modest” effect.

However, diagnosis rates hit a five-year low during the pandemic and have remained stagnant. Tens of thousands of people are feared to be living with the condition undiagnosed.

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Patients are waiting up to two years for a diagnosis on average, and more than four years if they are under 65, according to ARUK.

Writing in the Daily Express today, Alzheimer’s Society head of research Lucy Davendra also calls for urgent action. She says drugs like lecanemab and donanemab could spell “the beginning of the end for dementia”.

But she warns: “The current system means that many of those people won’t have access to the new drugs, as they won’t have an early or accurate enough diagnosis to know they are eligible for them. This needs to change.”

Dr Mitchell said there had been few changes to clinical pathways for dementia over the last two decades.

ARUK is now calling for a dramatic overhaul of diagnosis. A major report from the charity, due to be published next month, will call for the formation of an expert panel to bring together the country’s leading medics, policymakers and patients.

The proposed Alzheimer’s Disease Clinical Pathway Council would look at how GPs can be given access to emerging digital assessment tools, and the potential of blood tests.

It would also consider what investment is needed in traditional diagnostic methods such as PET scanning and lumbar puncture, and the staff to run them.

Dr Mitchell warned that if diagnosis rates are not improved, patients risk seeing their disease progress before they can access treatment.

“We need to be really assessing people in a matter of weeks to months, not months to years,” she said.

NHS England has set up a dedicated team to prepare for the delivery of new drugs.

But Dr Mitchell said other stakeholders had been planning for the arrival of groundbreaking treatments for years and should be involved.

She added: “We need to find a way to use everyone’s skills and experiences in a way that works for patients. It’s a chance to pull everyone together, get their views, contribute their concerns.

“We also need to create a system that can change. I think that in five years’ time, how we diagnose Alzheimer’s will look different to today. And in 10 years’ time it will look different yet again.

“All this progress on developing blood tests is coming on leaps and bounds and it will change things.

“People are looking into blood prick tests, using just a couple of drops of blood. There are eye scans and spit tests in development. They’re not there yet, but they could radically change how we diagnose.”

An NHS spokesperson said a dedicated team was already working alongside the National Institute for Health and Care Excellence (NICE), and looking at increasing diagnostic capacity for eligible patients to roll out treatments once they are approved.

They added: “The NHS is a world-leader in rolling out innovative new treatments for patients while providing value for the taxpayer – in fact there are five medicines available on the NHS for every four in Europe.

“With timely diagnosis so important, it’s encouraging to see the vast majority would seek help from their GP if they or a loved one noticed symptoms – if something is not quite right, please come forward as soon as possible.” 

‘My wife was diagnosed relatively early and was able to take part in research’

Brenda Whittle was diagnosed with Alzheimer’s disease in time to qualify for cutting-edge drug research studies.

The process took several years and numerous visits to memory clinics for assessments.

Brenda’s husband of over 60 years, Stephen, said: “As soon as Brenda was diagnosed, I got in touch with Join Dementia Research (to sign up to research) having seen their advert at our memory clinic.

“Fortunately, being diagnosed relatively early, she was allowed to take part in research and do something positive.

“Brenda was asked to participate in more than ten studies including two drug trials.”

Brenda and Stephen are in their 80s and based in north London.

The diagnosis also meant Brenda could receive medication to help manage her symptoms, which is still working well eight years on.

Stephen added: “Being on the radar of the memory clinic enabled Brenda to take advantage of the many services that they offer, including cognitive stimulation therapy, exercise, groups, and reminiscence groups.”

‘Coping with Mum’s symptoms would have been so much harder without a diagnosis’

Wendy Quazi only discovered she had young-onset Alzheimer’s after paying for a private assessment.

The 69-year old was diagnosed nine years ago after she sought help for worrying symptoms.

Her daughter Melissa, 35, said: “It was a really difficult time. She was feeling very anxious, confused, and depressed. She had panic attacks and would pace around the house.

“My stepdad Mike took her to the doctors, but she was told she had MCI (mild cognitive impairment) and to come back in five years.

“However, this didn’t feel like an accurate diagnosis and her symptoms got worse soon after.”

Mike was not satisfied and decided to pay for a private assessment, which revealed Wendy had young-onset Alzheimer’s disease.

He cared for his wife for almost a decade and she is now being supported in a care home.

Melissa, of London, said: “Coping with Mum’s symptoms would have been so much harder without a diagnosis, and if one of the new treatments had been available, she wouldn’t have been able to access them.” 

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