UK needs 'clearer path for dementia diagnosis and treatment'

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Andy Burnham
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UK Prime Minister Andy Burnham.

UK Prime Minister Andy Burnham, who lost his father to Alzheimer's disease last week, has been urged to implement a "cancer-style" reform of dementia care pathways.

A new proposal from the Alzheimer's Society and The King's Fund is calling for a sweeping set of changes to the way the NHS approaches dementia, including greater emphasis on blood biomarker-aided diagnosis, use of disease-modifying drug treatments, and a national referral‑to‑treatment target time of 18 weeks.

Dementia diagnosis, treatment, care, and support needs to make the same progress that transformed cancer care, according to Michelle Dyson, chief executive of the Alzheimer's Society, who noted that, unlike with cancer, there is no waiting-time target for dementia in England.

"If you have cancer, it is treated urgently, you get a specific diagnosis, and there is a clear pathway that takes you through your care and treatment," she said. "With dementia, it can be years before you get a diagnosis and, all too often, people are sent home with a leaflet and little else."

Dementia remains the UK's biggest killer and the condition the public fears the most, with a perception that there is no particular package of support available for people facing a diagnosis. There are also big variations in the approach to diagnosis, treatment, and care across the country, while community services are under-developed.

"Dementia is the UK's biggest killer, but it is not an inevitable part of ageing," said Dyson. "Nearly half (45%) of dementia cases worldwide could be prevented or delayed by addressing health and lifestyle factors, throughout our lives, like high blood pressure," she added, but that is not widely known.

There needs to be a major change in approach, not least because the pipeline of potentially disease-modifying therapies in clinical testing is at an all-time high, with over 30 for Alzheimer's alone in late-stage development.

At the moment, there are two disease-modifying treatments approved for marketing in the UK – Eisai/Biogen's Leqembi (lecanemab) and Eli Lilly's Kisunla (donanemab) – but neither is currently cleared for routine NHS use due to their modest clinical benefits and can only be accessed with a private, paid-for prescription.

With so many new candidates in the pipeline that could offer improved efficacy, alone or in combination with existing drugs, King's Fund chief executive, Sarah Woolnough, said: "We must also see action now to prepare for treatments of the future. Otherwise, we risk a situation where drugs are approved, but there isn't the workforce or tools in place for people to access treatments."

UK-first brain health clinic launches

Meanwhile, a step down this path was taken when a UK-first brain health clinic that aims to transform how dementia is diagnosed, slowed down, or prevented launched yesterday, on World Alzheimer's Day.

The Manchester Brain Health Centre (MBHC) is a two-year pilot spearheaded by Alzheimer's Society in partnership with Manchester University NHS Foundation Trust, Greater Manchester Mental Health NHS Foundation Trust, The University of Manchester and supported by NHS Greater Manchester.

It brings together psychiatrists, vascular specialists, clinical academics, and a multidisciplinary team to identify and support people at the earliest stages of memory loss, and provides access to advanced diagnostic techniques such as MRI scans, lumbar punctures, heart health checks, and behavioural assessments.

"We are creating a model which we believe could be adopted more widely," said Prof Adam Greenstein, consultant geriatrician at Manchester University NHS Foundation Trust.

"Through this pilot, we will be generating the evidence to support future service collaboration and development by clinical, research, and academic teams across the country."