UK health system must get ready for new Alzheimer’s treatments

Faced with COVID-19 backlogs and workforce shortages, and mindful of controversy in the US and vocal clinical scepticism around the Alzheimer’s treatment aducanumab, some NHS management chiefs may have breathed a sigh of relief at the EU regulator’s rejection of the medicine last year.

Introducing a new treatment for this complex disease, for which there have been no new medicines in 20 years, would be a challenge even for a health service with spare capacity.

It would be tempting to now kick this thorny problem into the long grass. But as scientists close in on a new generation of treatments for Alzheimer’s disease, the most common cause of dementia, the NHS must urgently accelerate its efforts to prepare.

New treatments are on the horizon

Last year’s surprise move from the US Food and Drug Administration (FDA) to grant a licence for aducanumab’s use in early Alzheimer’s was conditional on further data collection. That decision has been hotly debated by clinicians and researchers, and few in the UK who were following the drug’s progress were surprised when the European Medicines Agency (EMA) refused a licence for its use in Europe.

But there is now a real risk of deprioritising urgent action to prepare the UK health system for when a new Alzheimer’s drug is approved.

Aducanumab may not be that drug at this time, but with 41 phase III Alzheimer’s trials currently underway and many more drugs working their way through the pipeline, it’s a question of when – not if – new treatments will come.

The NHS is not prepared

There are a number of challenges around approving new dementia medicines, including how health systems can determine their cost effectiveness.  The reality is, however, that if any one of these were to be deemed safe and effective for use in the UK, many people affected by dementia would still face a significant wait to access them. Currently, only a small number of specialist clinical research centres would be able to access the right scans, tests and administer these potentially life changing treatments.

Any approval of a disease-modifying treatment for early Alzheimer’s in the UK in future will bring into sharp focus just how unprepared our health system is to deliver it. We are deeply concerned at the lack of political and NHS engagement around this impending reality – and hope that the Government’s forthcoming Dementia Strategy sets out a clear roadmap for action.

The majority of people with dementia in the UK receive their diagnosis and treatment from a psychiatrist working in a memory clinic. Our own research with the Royal College of Psychiatrists in 2021 showed that only 6% of psychiatry services are fully able to meet the current clinical guidance for diagnostic testing.

In fact, more than half of psychiatrists said it would take up to five years for their service to be ready to deliver new treatments. This is likely to be compounded by the impact of the pandemic.

Like aducanumab, many of the treatments being trialled target the hallmark Alzheimer’s protein, amyloid. But these treatments would require confirmation of amyloid build-up in the brain. This would need specific diagnostic tests that most services in the UK aren’t currently set up to routinely deliver.

Only 7% of psychiatrists feel they have adequate access to these diagnostic tests and fewer than one in three feel confident interpreting their results.

In short, approval of any disease-modifying Alzheimer’s treatment will require significant investment in capacity, infrastructure and skills. These changes cannot happen overnight.

COVID-19 recovery – and beyond

All of this extends beyond what’s needed to address the existing backlog caused by COVID-19, with at least 35,000 people now waiting for a dementia diagnosis. Even without new treatments, the impact of not diagnosing Alzheimer’s or other forms of dementia cannot be ignored. Without a diagnosis people cannot access the right support, cannot be prescribed medicines that may help their symptoms, and are denied the opportunity to take part in research.

The development of community diagnostic hubs and elective recovery plans will largely focus on conditions such as cancer or orthopaedics with budgets of billions for the next three years. This dwarfs the government commitment so far to dementia diagnosis of £17 million.

This lack of investment in dementia reflects a broader lack of priority given to the condition. Without national leadership, there is huge risk that people with dementia and struggle carers who struggle to navigate the healthcare system will fall through the gaps – deepening health inequalities across the UK.

With Alzheimer’s and other dementias now overtaking COVID-19 as the leading cause of death in England and Wales, we would argue there is no other health condition more in need of government and NHS prioritisation post-pandemic.

The UK has been a world-leader in delivering life-saving COVID-19 vaccines, but it took bold, coordinated and ambitious action. We must see that same approach – including a Dementia Medicines Taskforce – if we’re to take services past post-pandemic recovery and ensure the NHS is set up to deploy the Alzheimer’s treatments of the future.

Readiness for new treatments must be at the heart of the government’s forthcoming Ten Year Dementia Strategy. This must bring together clinicians, people with dementia, researchers, industry and the NHS to take decisive action now to prepare for the breakthroughs of tomorrow.

With new treatments on the horizon the UK health service has time to ready itself – but that time is growing short.

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