21 May 2024
Dementia Diagnosis and Research

There are currently 900,000 people living with dementia in the UK and this is projected to rise to 1.6 million by 2040, so research is crucial to understanding the condition and improving outcomes for those affected.

The Government is committed to supporting research into dementia and has committed to double funding for dementia research, to £160 million per year by 2024/25. 

In August 2022, the Dame Barbara Windsor Dementia Mission was launched along with £95 million of government funding. The mission is part of the commitment to double dementia research funding and aims to speed up the development of new treatments. 

This was followed by the announcement of £6 million funding in March 2024 to boost clinical trials and innovation, including work in Northern Ireland on how AI can be used to support dementia diagnosis, and research in Scotland looking at how ‘biomarkers’ found in blood can help detect the disease early.

A new taskforce – made up of industry, the NHS, academia and families affected by dementia – will lead this work to allocate dementia funding. You can register your interest to take part through the Join Dementia Research website here: https://www.joindementiaresearch.nihr.ac.uk/

The National Institute for Health and Care Research has also launched a number of new initiatives to support dementia research, such as investing nearly £11 million to develop new digital approaches for the early detection and diagnosis of dementia.

Finally, the Government has announced its intention to develop and publish a Major Conditions Strategy. Dementia is one of the six major conditions included in the strategy.

Last year, the Government held a call for evidence for the Major Conditions Strategy. The Government is analysing evidence received and will respond in due course. 

Delivery Plan for the Dame Barbara Windsor Dementia Mission

I note your concerns over the timeline and delivery plan for the Government's Dame Barbara Windsor Dementia Mission. I am reassured that the Government remains strongly committed to supporting research into dementia, including its commitment to double funding for dementia research. The Government has a strong record in this area, having spent over £454 million on dementia research from 2018/19 to 2022/23.

Lecanemab and Donanemab

I am greatly encouraged by the clinical trial results for Lecanemab and Donanemab, the first drugs of their kind to demonstrate a reduction in the rate of decline in people's memory and thinking in clinical trials. These findings will bring hope to the many thousands of people affected by dementia, and I look forward to receiving further updates about the development of these drugs. Research conducted and funded by medical research charities is critical to discovering new treatments and interventions for diseases like dementia, and I congratulate Alzheimer's Research for the work that has led to these findings.

New medicines must receive authorisation from the Medicines and Healthcare products Regulatory Agency (MHRA) and a recommendation from the National Institute for Health and Care Excellence (NICE) to demonstrate clinical and cost effectiveness before they can be made routinely available to National Health Service patients in England.

NICE’s appraisals of Lecanemab and Donanemab for treating early Alzheimer's disease are currently underway and, subject to licensing, NICE expects to publish final guidance in summer 2024 as close to licence as possible.

NICE has begun work in readiness for the companies submitting their evidence. This includes work done by NICE’s Health Technology Assessment Innovation Laboratory (HTA Lab) to identify the key issues that might arise during planned and future evaluations, based on current knowledge, publicly available evidence and in-depth discussions with researchers, patient groups and National Health Service colleagues.

The NICE HTA Lab report found that NICE’s methods and processes for evaluating new treatments for use in the NHS are appropriate for the new class of Alzheimer’s drugs and identified key issues that need to be considered during evaluation.

Dementia Diagnosis

Due to the impact of the pandemic, the estimated dementia diagnosis rate fell below the national target for the first time since 2016. While the rate has recovered slightly since the early part of the pandemic, there is more to do if we are to reach the national target for two thirds of people with dementia to be formally diagnosed. In 2021-22, £17 million was made available to Clinical Commissioning Groups to address dementia waiting lists and increase the number of diagnoses, which I hope will have an impact in our local area.

In December 2022, the recovery of the dementia diagnosis rate to the national ambition of 66.7 per cent was included in the NHS priorities and operational planning guidance as part of the refined mental health objectives for 2023/24. This reinforces dementia as a key priority for NHS England and provides a clear direction for integrated care boards to support delivery of timely diagnoses within systems. The estimated dementia diagnosis rate has been increasing throughout 2023 and in October reached 64.5 per cent.

Furthermore, the Office for Health Improvement and Disparities’ Dementia Intelligence Network has been commissioned by NHS England to develop a resource to support investigation of the underlying variation in dementia diagnosis rates. The aim of this work is to provide context for variation and enable targeted investigation and provision of support at a local level to enhance diagnosis rates. The tool has been released and is available via the NHS Futures Collaboration platform.

Dementia Research

The Department, via the National Institute for Health and Care Research (NIHR), invests in world-class facilities, expertise and a skilled delivery workforce for clinical research in the NHS and wider health and care system. This includes the Dementia Translational Research Collaboration, which plays a critical role in coordinating UK dementia research in early phase clinical trials and the NIHR Clinical Research Network Dementias and Neurodegeneration Specialty, which supports patients, the public and health and care organisations across England to participate in dementia research spanning the full translational research pathway.

The multi-year Vision for the Future of UK Clinical Research Delivery was published in 2021, setting out the Government's ambition to create a patient-centred, pro-innovation and digitally enabled clinical research environment. The Government also commissioned Lord O’Shaughnessy to conduct a review into commercial clinical trials following a drop in the UK’s performance during and following the pandemic. The Government published the full response to the Lord O’Shaughnessy review in November 2023. 

In the Autumn Statement 2023, the Chancellor announced that the Government is launching the first Clinical Trials Delivery Accelerator (CTDA) focused on dementia, with up to £20 million of the £121 million funding announced for clinical trials at the May life sciences moment, to help innovation reach NHS patients even faster.