NHS 'simply not ready' for revolution in dementia care, experts warn

Thousands of people with dementia risk missing out on breakthroughs because the NHS is “simply not ready” for a new era of diagnosing and treating Alzheimer’s, experts have warned. A series of papers published in the prestigious Lancet medical journal predicts that the disease landscape will be dramatically transformed in the coming years by new drugs and blood tests. But the papers’ 40 authors warned that the potential of “major innovations” will not be realised without rapid reform.

Britain’s leading dementia charities last night said the future was “full of hope” and called on the Government to ensure that people do not miss out. Fiona Carragher, chief policy and research officer at Alzheimer’s Society, said: “A new era for the treatment and diagnosis of Alzheimer’s disease is here, confirmed by 40 leading experts in these Lancet papers. Research has come a long way, the pace of new developments is rapid and the future is full of hope. But we risk people living with dementia in the UK not being able to benefit from these big breakthroughs unless we start preparing our NHS now.

“It’s vital that the UK government ensures that people with dementia aren’t left behind. We want to see better access to early diagnosis so people don’t miss out on the narrow window of eligibility to benefit from future treatments which can slow Alzheimer’s disease.”

David Thomas, head of policy and public affairs at Alzheimer’s Research UK, said: “In under a decade, the number of experimental treatments for Alzheimer’s, the leading cause of dementia, has doubled, and our understanding of the disease has advanced faster than ever before.

“Yet as these papers highlight, scientific momentum alone is not enough. It demonstrates the major implications for how our health services are organised and underlines the need to build consensus among clinicians who, for so long, have had few options to offer their patients.

“Turning research breakthroughs into change for people affected by dementia is a challenge that governments and health service leaders must address.”

Almost one million people are now living with dementia in the UK — and that figure to set to soar due to the country’s ageing and growing population.

Alzheimer’s disease is the most common form of dementia, accounting for around 60-80% of cases.

Recent years have seen major developments in Alzheimer’s research, including the approval of the first drugs proven to both slow symptoms and tackle their underlying cause.

However, only two thirds of people with dementia currently have a diagnosis, meaning up to one in three are set to miss out on accessing treatments early, when they are more likely to be effective.

Alzheimer’s Society has previously highlighted the lack of access to existing “gold standard” tests such as lumbar punctures and PET scans, which only around one in 50 patients receive.

Major trials are under way to find a reliable blood test that could improve diagnosis rates. British patients are currently being recruited to trial a test that measures levels of a protein called p-tau217, with results expected within three years.

Writing in The Lancet, the experts predict that blood tests “will lead to a new diagnostic revolution and bring about major changes in healthcare systems worldwide”.

Lead author Professor Giovanni Frisoni, a clinical neurologist at the University of Geneva in Switzerland, said there was a need for societal change to ensure current and future Alzheimer’s patients benefit fully from scientific advances.

He added: “Blood tests, biological drugs for Alzheimer’s disease, and prevention interventions are propelling care into entirely new and exciting territory.

“However, the old needs of patients will not disappear. On the contrary, more general practitioners and dementia specialists will need to master the less glamorous but steady advances made in the past few decades in the care and treatment of behavioural disorders, the use of sophisticated diagnostic imaging and laboratory tools, and psychosocial care.

“A concerted societal effort in this direction will enable our current and future patients to benefit fully from the potential of scientific and technological advances.”

Prof Frisoni said understanding of Alzheimer’s disease is going to “change radically in the near future”.

He added: “As it happens in all medical revolutions, it’s not something that takes place overnight, it will take place over years, but the path has clearly been taken, and there’s no way back,” he said.

The experts’ analysis also found that the drugs lecanemab and donanemab — which have been rejected for NHS use after assessors decided their benefits were too small to justify the costs — slow the progression of Alzheimer’s as effectively as treatments for other conditions such as cancer, rheumatoid arthritis and multiple sclerosis.

For example, they found that lecanemab was more effective at treating Alzheimer’s than the drug ocrelizumab is for MS. Ocrelizumab costs three times as much as lecanemab and is available on the NHS.

Prof Frisoni said: “Of course, other conditions are different; multiple sclerosis is different from Alzheimer’s disease. But there are some dimensions that we can use as an anchor to compare these drugs.

“When you do this exercise, you realise that these drugs for Alzheimer’s are not more toxic, are not less effective, are not more expensive.

“What is really different is the potential size of the beneficiaries. This is the real difference. The discussion shifts from a clinical discussion to a political discussion. Does society want to invest?”

One in three people born in the UK today will develop dementia in their lifetime, according to Alzheimer’s Society. Around 1.4 million people in the UK are projected to be living with the condition by 2040.

Dr Richard Oakley, the charity’s associate director of research and innovation, said the series of papers “mark the beginning of a new era in Alzheimer’s disease diagnosis and treatment”.

However, he added: “The painful truth is that the NHS is simply not ready and isn’t keeping pace with the science. We now run the very real risk that people living with dementia will miss out on the opportunity to benefit from these big breakthroughs.

“It’s vital that the UK government keeps its eye on the ball so people with dementia aren’t left behind. We want to see better access to early diagnosis so people don’t miss out on the narrow window of eligibility to benefit from treatments which can slow Alzheimer’s disease.

“Preparing for future treatments will take a society of researchers, clinicians and decision-makers.”