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NHS dementia services may not deliver potential of disease-modifying therapies and testing

NHS dementia services will need to make big changes to identify which patients may be eligible for new disease-modifying therapies such as donanemab and lecanemab, which are likely to be available later this year.

Currently less than 1% of patients in NHS memory clinics had amyloid biomarker testing performed, and this will need ‘urgent’ service development if patients are to access newer treatments once approved.

A retrospective study of 1,017 patients who had attended either memory services or a specialist cognitive service in London found a substantial number of patients could be eligible for disease-modifying therapies if they become available on the NHS.

Of the 517 attending a memory clinic, researchers found that 32% would likely be considered for the drugs, yet in this setting patients did not have access to tests they would need before starting treatment.

In the specialist service where amyloid biomarker tests were available, only 14% of the 500 patients would be potentially eligible for treatment, the researchers reported in the Journal of Neurology, Neurosurgery and Psychiatry.

They noted that in the current set up of psychiatry-led community memory clinics – where most dementia care is delivered – it is extremely unlikely the disease-modifying therapies would be administered.

Their adoption will require additional staff and training across imaging, diagnostics and pathology, and other clinical services, the team from Queen Mary University of London said.

It will also require access to laboratories that can carry out biomarker testing to confirm eligibility, they added. 

There is also ‘real potential’ to amplify existing inequities in service access, they noted.

Both donanemab and lecanemab have been reported in clinical trials to slow the progress of Alzheimer’s disease in its early stages. Approval for use on the NHS is expected this summer.

Professor Ruth Dobson, professor of neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: ‘The development of disease modifying therapies for dementia has the potential to drive significant service changes.

‘We have seen the impact of this in [multiple sclerosis] and stroke. It is crucial to understand and plan such changes proactively in order to ensure best care for all people living with dementia, regardless of initial treatment availability and eligibility.’

Study lead, Professor Rimona Weil, consultant neurologist at the UCL Dementia Research Centre and honorary consultant neurologist at the National Hospital for Neurology, said the researchers had worked with clinicians running memory clinics was crucial to get ‘real-world estimates for how many people are likely to be referred for these new drugs for the first time’.

David Thomas, head of policy and public affairs at Alzheimer’s Research UK, added: ‘New Alzheimer’s drugs are finally on the horizon, but for their full potential to be realised, health systems need to be able to offer people with symptoms of dementia an accurate and early diagnosis to find out whether these treatments could benefit them.

‘As this research demonstrates, the NHS is a long way from being able to do this testing routinely.’

A version of this article was originally published by our sister publication Pulse.