Britain lags behind much of Europe in accurately diagnosing Alzheimer’s disease, meaning patients have no chance of accessing breakthrough treatments.
A new generation of drugs which are proven to slow the progress of Alzheimer’s can only be given to those in the early stage of the disease. However, only two thirds of dementia patients in the UK currently get a formal diagnosis, and fewer than one in ten get “staged”, which indicates how far the disease has progressed from mild or moderate to severe.
Doctors said the lack of staging for dementia patients would be like telling someone they have cancer “but not what type of cancer, what stage of cancer they have, or the prognosis”.
• Alzheimer’s ‘more common than previously thought’
To get accurate disease staging, patients need specialist diagnostic tests to confirm the build-up of toxic proteins in the brain called amyloid and tau. This involves either advanced positron emission tomography (PET) brain scans, or spinal fluid tests, performed via lumbar puncture, known as biomarker testing.
Just 5 per cent of Alzheimer’s patients in the UK get a biomarker-confirmed diagnosis, according to a study of 717 NHS patients published in the Journal of Alzheimer’s Disease Reports. This is the lowest among major European countries surveyed, with 30 per cent of patients in Italy getting access to biomarker testing, and 20 per cent in Germany and Spain.
Charities are calling for the NHS to invest in diagnostic equipment so patients can get an early and accurate diagnosis, confirming their subtype of dementia.
• What are the first signs of Alzheimer’s and how does it differ from dementia?
Dr Emily Pegg, the associate vice-president at the pharmaceutical company Eli Lilly, said: “In the UK we are really lagging behind in terms of our testing capacity for Alzheimer’s.
“The vast majority of patients are not getting a stage recorded, so they don’t know whether they’re early in the disease or later in the disease. It is like diagnosing someone with cancer and not saying what subtype of cancer they have got or what stage of the disease they have got. We would never stand for that in cancer.”
There are estimated to be 982,000 people in the UK with dementia, and Alzheimer’s accounts for about 70 per cent of cases.
A study of 12,000 Alzheimer’s patients in London, presented at the Alzheimer’s Association International Conference, found that fewer than one in ten were staged as part of their initial diagnosis, and only one third got staged at any point during the eight-year period.
• How to prevent dementia: the daily habits neuroscientists suggest
Pegg said that staging is crucial to giving patients and their family clarity about “what the future path is likely to be”, and to plan social care and finances.
It is also essential to determine eligibility for a new wave of treatments, which clear toxic proteins from the brain to slow the progress of Alzheimer’s. The first two such drugs, called donanemab and lecanemab, have been approved for use in the UK but are not available on the NHS.
Pegg said: “The treatments are only licensed at the earlier stages of disease. Once people have transitioned into the later stages, they become ineligible for those medicines. If patients don’t get a staging, they have no opportunity to access those medicines. So there is no meaningful opportunity to delay the progression of their disease, it will be a fairly clear path towards cognitive deterioration and a complete loss of independence.”
Relatives of those with dementia say that staging and early diagnosis would be hugely beneficial in helping them understand how their loved one’s disease is likely to progress.
This includes Paul Lindsay, 52, who cares for his father Richard, 80, who first experienced symptoms when he was 70. It took four years for him to get diagnosed, requiring multiple trips back and forth to a GP, and then waiting nearly a year for a brain scan at a hospital.
Paul Lindsay and his father, Richard
“That is a long, long time to wait when someone is struggling,” Lindsay said. “Getting diagnosed early would have meant we would have had time to come to terms with what was happening to him.
“When he was diagnosed, we were told he had Alzheimer’s but nothing else, and there was no staging. It meant we couldn’t understand if interventions could be made or what part of the journey he was on. The late diagnosis meant my mum wasn’t able to prepare for becoming a carer, she wasn’t prepared to lose a husband like she has.
“My dad’s still physically quite fit. He was 80 yesterday, but his head’s totally gone. The man has gone, and he’s been cheated, when he should have had the opportunity to receive different treatments to support him and slow this journey down.”
Lindsay and his father, Richard
Michelle Dyson, the chief executive of Alzheimer’s Society, said: “Dementia is the UK’s biggest killer, yet more than a third of people don’t have a diagnosis.
“And even for those who do, it takes over three years on average from when symptoms start. That’s three years without answers, and without access to the care, support and treatments that a diagnosis can unlock.
“At Alzheimer’s Society, we believe staging — clearly identifying what stage of dementia someone is at — is essential if we’re to diagnose people earlier and more accurately.
“Nine out of ten people told us getting a diagnosis made a real difference — that’s why getting more people diagnosed at an early stage matters.”