Dementia Support Line
What we think about dementia research
Read about our position on dementia research and the changes we want to see around recruitment, funding and support.
What we think
Only research has the potential to rapidly revolutionise how people with dementia are diagnosed, supported, and cared for, and is instrumental in working towards a cure.
However, dementia research in the UK has been historically underfunded, hampering vital efforts that could support our health and social care system to respond to one of society's biggest healthcare challenges of our time.
We need to see clear action in the following areas:
- Recent successful drug trials have shone the light on a future where we can treat and possibly prevent dementia. Investing in the research, development, and the implementation of new diagnostic techniques will support people living with dementia to receive an early and accurate diagnosis, so they can access disease modifying treatments.
- The recruitment of people into dementia clinical studies is acknowledged to be one of the biggest barriers to dementia research. The Government's recent investment in research needs to lead to increased participation of people living with dementia, by addressing the associated barriers and inequalities.
- A severe lack of funding opportunities often means dementia researchers in the earlier stages of their career are unable to continue in the field. We need to see targeted funding and support for early career dementia researchers.
Background
The challenges
There is inequity of access to, and waiting times for diagnosis services, including brain scans and emerging and innovative diagnostic tools and technology. The latest National Audit of Dementia states that 23% of memory assessment services are not able to refer for specialist investigations.
The cost of an amyloid PET ranges between £1300-1850 per scan. There are only 50 PET scanners in the UK, and the majority of their scan time is used in the field of oncology.
While Cerebrospinal fluid analysis (CSF) is a cost-effective way of improving rates and accuracy for Alzheimer’s disease, the upfront and running costs of implementation have kept CSF from being widely used.
The cost–effectiveness and ease of implementation suggest that blood tests will likely play a critical role in diagnostics in the next 5 years. However, until these are clinically validated, and as a confirmatory measure going forward, CSF testing and/or PET scanning will be required.
As it stands, only 2% of people living with dementia are registered with Join Dementia Research, which matches people to dementia studies in the UK and in 2021/22, phase three studies in dementia supported by the National Institute for Health and Care Research recruited 61 people onto clinical studies, while cancer studies recruited 6,697.
The Dementia APPG’s Fuelling the Moonshot report details how people affected by dementia share a sense of empowerment by being involved in research, but also found that patients are often not aware of the opportunities to take part.
In 2019 there was one dementia researcher for every four cancer researchers. Early Career Researchers within the field of dementia have been particularly affected by the pandemic, and their careers impacted by other long-standing issues associated with underfunding.
The pandemic’s impact has seen many being locked out of labs and universities for months due to lockdowns, or funding for their research ending early. It also prevented researchers from being able to meet in person to share expertise or receive the full support and supervision from which they would usually benefit.
What change do we want to see?
- Many more people living with dementia receive a timely and accurate diagnosis, through greater access to existing diagnosis methods and the development and implementation of blood tests.
- The dementia mission to ensure people affected by dementia are included in shaping the work.
- Greater support for Join Dementia Research through the dementia mission and the NHS to increase referrals to dementia clinical trials via healthcare professionals.
- Government to invest across the dementia research pipeline from discovery to clinical science and prioritisation of early carer researchers.
What Alzheimer’s Society is doing
- Launching a £5 million Biomarker Challenge with Alzheimer’s Research, with the aim of validating a blood test for use within a clinical setting.
- Working with the leads of the Dementia Mission to help shape the work and ensure people affected by dementia are included in the design and research process.
- Continuing to fund and support researchers.
- Involving our research volunteer network and consulting our Research Strategy Council (RSC) comprising of leading scientists, clinicians, and policymakers who work at the forefront of dementia research in the UK.
- Recruiting people to dementia research through Join Dementia Research and understanding the barriers to dementia research participation.
- Championing the benefits and importance of research participation through local systems and national policymakers, and collating best practice case studies where appropriate.
- Continuing to fund and work with the UKDRI.
Prepared by Alzheimer’s Society’s Advocacy & System Change. For more information contact [email protected]
Take part in dementia research
Find out how you can get involved in dementia research and what it involves.
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In 2022, the Prime Minister launched the UK-wide Dementia Mission, as part of the Government's commitment to double annual dementia research funding by 2024/25.
The Office for Life Sciences and the Department of Health and Social Care are leading on the mission, which aims to develop platforms to detect wet biomarker, digital & imaging technologies and boost the number and speed of clinical trials in dementia and neurodegeneration.
In England, the 10-year plan on dementia, announced in 2022, had a focus on new medicines and emerging science and technology but was not progressed by the Government. In January 2023, they announced a Major Conditions Strategy covering six conditions including dementia.
We hope the strategy will stress the importance of research to develop care technology, dementia treatments and diagnostic methods.
Government gave over £2.8 million to dementia charities, such as the Alzheimer’s Society, supporting early career researchers to defeat dementia by researching the causes, cure, care, and prevention of the disease and they have given £11 million funding to NIHR to develop new digital approaches for the early detection and diagnosis of dementia.
Most recently, we welcomed the Government’s £121 million investment to cut the time it takes for new medicines to reach patients, through investment into clinical trials. This includes £81 million investment into the improvement of real–time data on clinical trials to improve participation.
In July 2022 we announced a £7.5 million partnership with NIHR (National Institute for Health and Care Research) for new dementia research, to be delivered via 45 new early career research positions and the launch of a Dementia Researchers Leaders programme.
We also launched the Longitude Prize on Dementia, with InnovateUK and Challenge Works, to develop cutting-edge assistive technologies that empower people with dementia to live more fulfilled, independent lives.
In 2022, UKDRI launched the Biomarker factory to help find new ways to detect the earliest stages of neurodegenerative disease and monitor its progression in the search for new treatments.
They also launched a Care Research and Technology Centre that develops and translates technologies to enable people to live well with dementia, including the new platform, ‘Minder’, which is aimed at delivering personalised care to people living with dementia in their own homes.
In 2023, the institute had its last 5 years of work reviewed by a panel of international experts and peers. As a result, the Medical Research Council committed £131million as part of a collective commitment with the other founding funders, Alzheimer’s Society and Alzheimer’s Research UK, of £150 million for the next five years.
In late 2022 Lecanemab was announced as the first ever drug to slow down the progression of Alzheimer's disease.
In 2023, another disease modifying drug, Donanemab, was also shown to have a positive effective, with people taking the drug showing a 40% reduction in the decline of their ability to carry out daily activities.
There are currently 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease, 78% of which are designed to try and slow down how quickly the disease progresses.
However, before disease modifying treatments can be made available in the UK, approval is required by the Medicines and Healthcare Products Regulatory Agency (MHRA), followed by the National Institute for Health and Care Excellence (NICE) to approve its safety, benefits and cost-effectiveness for NHS use.