Alzheimer’s Research UK Calls for NHS Pilot Trials as New Dementia Drugs Remain Out of Reach for Most Patients
Alzheimer’s Research UK has urged the government to establish NHS pilot trials for two newly licensed drugs that can slow the progression of early-stage Alzheimer’s disease, warning that care home residents and other eligible patients are being left behind while the treatments remain available only to those who can afford to pay privately.
The two drugs — lecanemab and donanemab — have been licensed as safe and effective by the UK medicines regulator, and clinical trials have demonstrated that both can slow disease progression in people at the earliest stages of Alzheimer’s. However, neither has been approved for NHS funding, with health technology assessors ruling that they do not meet the threshold for cost-effectiveness.
For care home operators and frontline staff, the implications are significant. Many residents living with early-stage dementia, or family members seeking to delay a loved one’s decline, are already asking questions about access to treatments that are available in other countries.
In nations where the drugs are being used more widely, emerging real-world evidence suggests the benefits last longer than initially indicated by clinical trial data, and that serious side effects are occurring less frequently than first feared — developments the charity describes as encouraging.
Nevertheless, Alzheimer’s Research UK acknowledges that even if NHS funding were approved tomorrow, the health service is not currently equipped to deliver the treatments at scale. Diagnostic infrastructure capable of identifying suitable candidates at sufficiently early stages of disease does not yet exist in adequate numbers, and there is insufficient trained workforce to manage patients receiving the new medicines.
Pilot trials, the organisation argues, would address this readiness gap.
Running the treatments through selected clinics on a controlled basis would allow NHS leaders to develop the systems needed to identify eligible patients — including those from more diverse backgrounds than those who participated in the original clinical trials — and to determine how staff should be deployed, how safety monitoring should be organised, and how fair access across the UK could be ensured.
The approach mirrors what has long been standard practice in oncology and cardiology, where managed access programmes have routinely been used to introduce complex new therapies while real-world evidence is gathered.
Alzheimer’s Research UK is also calling for a modernisation of the way dementia drugs are evaluated, arguing that current methods fail to capture the full societal value of slowing cognitive decline in an ageing population. Even a modest delay in disease progression, the charity notes, can translate into additional months of independence for a person living with Alzheimer’s — months that carry profound significance for individuals, families and the care sector alike.
The charity is clear that its proposals are not a criticism of the NHS. However, it maintains that the current position — in which access to potentially life-changing treatment depends on personal wealth — is untenable.
“Science has moved forward,” the organisation stated. “With the right steps now, the health system can move with it. Families across the UK deserve nothing less.”
For residential and nursing care providers, the development of pilot trials and improved early diagnostic services could in time change the profile of residents entering care — potentially delaying the point at which people with dementia require the highest levels of support.
