Half a million dementia cases could go undiagnosed by 2040, study claims

Despite breakthrough in treatment, detection numbers haven’t recovered from lockdown

More than half a million people with dementia could go undiagnosed and untreated in the UK by 2040 without a radical shift in detection of the disease, a major report shows.
Regulators are assessing the first drugs that have been found to slow down progression of Alzheimer’s disease. The NHS is making preparations to allow it to roll out the drugs, lecanemab and donanemab, if they get the green light.
Trial results last year were the first positive breakthroughs in treatment for more than two decades, suggesting they could be the first drugs in history that appear to slow the progress of the disease, rather than just mask symptoms.
But both treatments require far more diagnostic capacity, with MRI scanning, lumbar punctures, and PET scanning needed to establish which cases will benefit from the drugs.
On Monday, a report warns that without improvements from current diagnosis rates, more than 565,000 people will be undiagnosed by 2040 – a rise of almost a quarter from now.
The forecasts from Future Health, a research centre founded by a former government adviser, are based on analysis which says dementia cases will rise from 850,000 to 1.5 million as the population ages.
Of those, more than 565,000 would be undiagnosed, up from 315,000, without a boost to diagnosis rates.
Under David Cameron, the Government designated dementia as a priority, setting a target for 67 per cent of people with conditions such as Alzheimer’s to receive a diagnosis.
This target was achieved until the first lockdown – but during the pandemic the numbers receiving assessment or access to services fell sharply, with patients struggling to see GPs who could refer them to specialist services.
The target in England is still being missed, with 64.6 per cent of cases diagnosed. Wales performs worse at 53.9 per cent, while diagnosis rates in Northern Ireland and Scotland are hard to establish.
The study is based on forecasts from the London School of Economics, which suggest the number of dementia cases around the UK will rise by almost 80 per cent by 2040, with a doubling in the most severe cases.
This is based on analysis by the Office for National Statistics predicting a 20 per cent increase in the number of people aged 65 to 74 between 2019 and 2040, and a 114 per cent increase in the number of people aged 85 and over.
Around one in five of those aged between 85 and 90 will suffer from dementia, rising to one in three of those in their 90s.
The report calls for each country to publish a system readiness plan for new potential treatments by the end of the year, supported by increased investment in diagnostics and scaling up post diagnostic support offers for patients.
The work was undertaken independently but was supported by a sponsorship grant by Eli Lilly, the manufacturer of donanemab.
Even if the NHS target was hit, around 490,000 dementia sufferers would be left without a diagnosis in 2040, according to its forecasts.
Just one in three integrated care boards which supervise local health services in England are meeting the 67 per cent target, NHS figures show.
Ten areas record a rate of below 60 per cent, with the lowest rates in Herefordshire,  Somerset and Dorset.
The study calls for more ambitious dementia diagnosis targets to be set along with the introduction of financial incentives to support their delivery.
Report author Richard Sloggett, a former special adviser in the Department of Health and Social Care, said the research showed that “business as usual” would not deliver the needs of patients.
He said: “The expected significant increase in dementia cases means that without investment in increased diagnostic capacity and capability more and more people will have undiagnosed dementia and be unable to access the treatment and care that they need.”
Boosting diagnosis rates and preparing “system readiness plans for new treatments for Alzheimer’s disease should be a priority for each government of the four UK nations, he said.
Donanemab was last year found to slow cognitive decline by 35 per cent, by removing sticky amyloid plaques from the brain.
Eisai/Biogen’s lecanemab was shown to slow decline by 27 per cent.
Since then, separate studies have suggested that a blood test to predict dementia up to 15 years earlier could help identify people who could benefit from new drugs.
Charities have already raised concerns that the NHS could deny such treatments, because the National Institute for Health and Care Excellence (Nice) methodology fails to take account of the knock-on effect of dementia on the economy, by pushing carers out of work.
NHS England board papers published earlier this year suggest that introducing the drugs could cost up to £1 bn a year, with around half the costs coming from the medications themselves.
They also say the drugs may offer a “relatively modest benefit” noting safety considerations, with brain swelling and bleeds reported.  The analysis suggests that between 50,000 to 280,000 patients could be eligible. .
David Thomas, Head of Policy and Public Affairs at Alzheimer’s Research UK, said: ‘’Urgent action is needed to ensure the NHS is ready for the arrival of new Alzheimer’s treatments.
“With decades of research now starting to turn the tide on dementia, the UK cannot afford to be in a situation where effective treatments exist but fail to reach those who stand to benefit the most.”
He called on the Government and all political parties to commit to investment in dementia, saying the health service needed to be ready to roll out effective new innovations once validated, including blood tests which have shown promise in revolutionising dementia diagnosis.
Alex Osborne, Alzheimer’s Society policy manager, said: “We urgently need to see government investment so people receive an early, accurate dementia diagnosis and can access vital care, support and treatment.
“We are soon due to hear whether the first disease-modifying treatments which could slow down progression of Alzheimer’s disease will be approved for use in the UK, and people need to know what type of dementia they have in order to confirm if they are eligible.”
An NHS spokesman said: “The pandemic had a significant impact on the dementia diagnosis rate, but thanks to NHS staff, who have worked hard to recover services, diagnosis rates have risen significantly over the last year and are now higher than most developed high-income countries.”
A Department of Health and Social Care spokesman said: “We are working to diagnose more people and provide potential new treatments as they become available. 
“This includes co-funding research into quick blood tests which have the potential to catch this condition sooner in thousands of patients. We are also doubling funding for wider dementia research to £160 million a year by the end of 2024/25.”