Guest Blog by David Thomas, Alzheimer’s Research UK.
Dementia remains one of the greatest challenges of our generation and affects nearly a million people in the UK. World Alzheimer’s Month this September is an important opportunity to reflect on what has been a landmark year in many ways for dementia research.
David Thomas, Head of Policy at Alzheimer’s Research UK, updates on the progress made in the UK and globally. David says we are at a tipping point where treatments are in the pipeline with the potential to tackle the underlying diseases that cause this devastating condition.
The state of dementia research in the UK
Dementia consistently remains one of the main causes of death and yet it is the only major condition that affects so many people’s lives where there are currently no treatments available in the UK. We also know that there are four cancer researchers for every dementia researcher and that it has historically been severely underfunded compared with other illnesses.
We’ve seen through our work at Alzheimer’s Research UK that real breakthroughs are possible. But the only way we can achieve this change for people with dementia and their families is with a sustained and substantial increase in dementia research funding. And the public know this too: that’s why more than 50,000 people signed our petition to hold the government to their 2019 commitment to double research funding.
First dementia treatment approved in US for a generation
Throughout 2020-21, we’ve seen first-hand the power of science to bring about breakthrough vaccines against COVID-19. We are committed to making the same incredible progress towards life-changing treatments for dementia.
Only one treatment, aducanumab (known commercially as Aduhelm) has been approved by the US regulator the FDA (Food and Drugs Administration) in the past 20 years.
Aducanumab is designed to target amyloid, one of the hallmark proteins that builds up in the brains of people with Alzheimer’s. The drug was tested in people who have mild cognitive impairment (MCI) and very early stage of Alzheimer’s, who have had amyloid detected in their brains using a PET scan. Early information suggests the FDA’s licence appears to be broad enough to cover anyone with Alzheimer’s disease, with the FDA highlighting uncertainties around the clinical benefit for patients.
However, the drug still must be reviewed by UK regulators, and even if aducanumab is made available in the UK, no single drug will work for every person with dementia. We simply can’t wait another generation for the next drug. We need a range of treatments so that we’re able to treat as many people with dementia as possible.
The importance of clinical trials
As we’ve seen with the COVID-19 vaccines, clinical trials are a crucial part of bringing safe and effective treatments to patients. There are currently more than 150 clinical trials of dementia treatments taking place. We are working closely with our researchers and colleagues in the pharmaceutical industry to identify ways to improve the chances of potential treatments successfully completing the trial process. The Government also has a key role to play to make sure that the UK is a world leader in dementia clinical trials
The pandemic has changed the way we live, work and carry out research. One of the biggest challenges in carrying out clinical trials is making sure that these trials have a diverse range of people to take part. Through Join Dementia Research, volunteers both with and without dementia, are taking part in research studies or clinical trials. These volunteers play an essential role in helping scientists and doctors to understand dementia and test potential new treatments.
Barriers to access
A big part of our work involves helping researchers and other partners navigate the space between clinical trials and a treatment actually being able to change patients’ lives. We are working to bridge the gaps between the laboratory bench and the patient bedside, and to ensure that our health system is ready to deliver new treatments when they become available. There are particular challenges around assessing the full value delivered by potential dementia medicines, especially for health systems managing stretched budgets – this is a key element of decision making around access to new treatments.
This film gives a short explanation about how treatments reach patients
At the moment when someone is diagnosed with a disease that causes dementia, such as Alzheimer’s, there are few treatment options for them in the UK, and that diagnosis can only happen once someone has started to display symptoms such as memory loss. This can often be too late and makes it much more challenging to identify people who will benefit from new treatments. In this situation, this actually makes the development of those new treatments that much harder – as it’s likely that future treatments will be most beneficial if given at an earlier stage.
Our recent report on diagnostics sets out what we can do to make sure that our healthcare system is ready once a drug for dementia has been approved.
One example of this is our recent work with the Royal College of Psychiatrists. In the UK diagnosis of dementia is largely provided by psychiatrists working in memory clinics. Together with the College, we were able to establish that psychiatrists were enthusiastic about continuing to play a leading role in the care of people with dementia in the advent of new treatments. However, only one in three (36%) of psychiatrists thought that they would be ready to adapt their services in order to diagnose earlier and deliver a potential treatment within a year. This highlights that a lot of work is needed to make sure that clinicians of all kinds have the support and expertise they need to deliver new treatments as and when the time comes.
Improved training and diagnostic methods require substantial investment from systems that are often under a lot of pressure to deliver existing services as well as prepare for the treatments of the future. That’s why our work as a charity to bring together decision-makers and ensure new developments in dementia research are being considered is so critical. One example of this is our Dementia Access Taskforce.
Dementia is a hugely complex condition and so is the research that is needed to change people’s lives. But progress is being made and we have many reasons to hope that we will soon be able to change the lives of those affected by this devastating issue.
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