At least a third of dementia patients would not benefit from breakthrough drugs because they have never been officially diagnosed with the disease, a report warns.
NHS figures show that only 64 per cent of people in England with dementia have a formal diagnosis, falling short of the government’s target of 67 per cent.
The lack of diagnosis means that thousands of people would never be in the running for drugs like lecanemab and donanemab, which are hailed as “important” in the battle to treat the disease.
Alzheimer’s Research UK said proven diagnostic techniques, such as lumbar punctures, were scarcely used and only 2 per cent of people suspected of having the disease received one.
The limited availability of diagnostic tests and the reluctance of some doctors to offer people a diagnosis at all has resulted in a postcode lottery, Alzheimer’s Research UK warned
The tipping point: The Future of Dementia report calls for the number to be increased from 2,000 to 20,000 per year.
This would require an investment of £16 million to fund diagnostic infrastructure, equipment and staff training, including 50 new band 6/7 nurses across the UK.
This should be followed by a sustained annual investment of £10 million until new diagnostic tools, such as blood tests, are ready to replace lumbar punctures, the report says.
Samantha Benham-Hermetz, from Alzheimer’s Research UK, said: ‘If people with dementia are to receive proper treatment – including the new medicines that regulators are currently looking at – they need to get a formal diagnosis.
‘But in England we know that over a third of people over 65 with dementia never get a diagnosis. This is completely unacceptable, as is the underlying diagnosis target of 67 percent.
“We wouldn’t accept this for any other condition, nor should we for dementia. In other UK countries this information is not even available because data on dementia diagnosis rates are not routinely published.’
It warned of the limited availability of diagnostic tests and the reluctance of some doctors to offer people a diagnosis at all has resulted in a zip code lottery.
Only 53 per cent of people with dementia in Herefordshire and Worcestershire will be diagnosed, compared to 73 per cent in South Yorkshire.
It comes as a second report predicts there will be a further 1.5 million cases of dementia in Britain by 2050.
Alzheimer’s Disease International (ADI) said more than 636,000 of these cases could be prevented by humans and governments were taking more action.
The charity said cutting back on alcohol consumption, quitting smoking, getting more exercise and maintaining frequent social contact could all lower the risk of Alzheimer’s disease.
Dementia remains the leading cause of death in Britain and is on track to be the country’s most costly health disease by 2030.
If nothing changes, one in two people will be directly affected by the disease, either by caring for someone with the condition, developing the disease themselves, or both.
Officials need to take more action to address known risk factors, such as obesity, air pollution and limited access to early childhood education, the report said.
Paola Barbarino, CEO of ADI, said: ‘This is a crucial step, in the absence of treatment or cure, to prevent as many cases as possible.
‘We need to ensure that the population at all ages is aware of strategies to reduce the risk of dementia and has access to the necessary information, advice and support services.’