Nurse Laura and patient Sue support the call for more participation in research (Image: Getty/Alzheimer’s Society)
Thousands more people with dementia must be supported to take part in research as we enter a “golden era” of breakthroughs, the UK’s largest dementia charity says today. Pioneering treatments and tests that were “unimaginable just a decade ago” are now within reach, according to Alzheimer’s Society. But experts warned that NHS patients are at risk of falling years behind as countries more involved in clinical trials roll out new innovations.
Dr Richard Oakley, the charity’s associate director of research and innovation, said: “We are entering a golden era for dementia research. But the hard truth is that diagnosis delays are stalling progress in the fight against the UK’s biggest killer. People are diagnosed too late and too often are not told what disease is causing their dementia, meaning they miss out on care, support and opportunities to take part in research.”
Around one million people are living with dementia in the UK — and that number is projected to rise to 1.4 million by 2040. In recent years, the first medicines proven to slow Alzheimer’s have been approved and promising blood tests developed that could detect the disease earlier.
However, the UK’s dementia research landscape lags at least 20 years behind progress made on cancer, according to Alzheimer’s Society. In the last five years, just 551 people were recruited into late-stage dementia trials in England, compared to over 24,000 in cancer trials.
Dr Oakley said a crucial first step is for the government to set more ambitious targets, including a timeframe within which anyone with suspected symptoms should receive a diagnosis or all-clear.
For over a decade, the target set for the NHS was for 66.7% of patients to receive a diagnosis at some point. This was removed from NHS Operational Planning Guidance for 2025/26.
The Government has committed to publishing a Modern Service Framework (MSF) for Frailty and Dementia this year as part of the 10-Year Health Plan for England.
Dr Oakley said: “I don’t know why we’d ever accept only two-thirds of people getting a diagnosis. You would not accept that for cancer — we’d be outraged.
“We actually have a 28-day target to receive a cancer diagnosis after meeting the GP, and I can see no reason why we shouldn’t be that ambitious.
“A good first step, as part of our Modern Service Framework, would be agreeing on a target timeframe for diagnosis. Eighteen weeks sounds like a good starting point.”
More detailed tests are also needed. Only 2% of people diagnosed with dementia in the UK are told whether they are positive for amyloid, a toxic protein associated with Alzheimer’s and the target of new drugs.
And once patients have a diagnosis, they need to know their rights and be given opportunities to join trials, Dr Oakley said. He added: “It’s not part of our culture yet, like it is in cancer, where everyone knows it’s their right to hear about clinical trials and often people are asked if they’re interested.
“We have seen a massive change in cancer from it being ‘the big C’ that no one discussed. The stigma barrier for dementia is hard and higher. People think dementia is still a natural part of ageing — it is not.
“You’ve got a situation where the biggest killer in the country isn’t even recognised as a disease by the vast majority of people. It is very difficult to beat something that people don’t even know is a problem.”
Stuart and Carol Jennings, and dementia research expert Dr Richard Oakley. (Image: Alzheimer’s Society)
The number of dementia trials launched in the UK had been declining for some years, but has recently improved. Dr Oakley paid tribute to the Government’s £50 million investment in the Dementia Trials Network (UKDTN) in 2024, which aimed to expand access to a larger, more diverse population.
It has worked with the Alzheimer’s Society to embed research nurses at trial sites to support patients throughout their journey and remove barriers to participation.
However, research by the UKDTN found that around eight in 10 people with dementia were not told about research opportunities by their clinician, and two-thirds did not know how to access such information.
Alzheimer’s Society invested £18.6 million into dementia research in 2024/25. It is calling for sustained government investment to build on the UKDTN’s foundation and attract more pharmaceutical research.
Dr Oakley said: “If we do this right, the UK could absolutely become the world’s leader in early phase clinical trials, I have no doubt. We could also play a big role in late-stage trials, where you need to recruit thousands of people, often multi-site, multi-country.”
Ensuring Britain is at the forefront of research will ensure NHS patients are not left waiting years to access innovations that become available in countries like the US and Japan.
Dr Oakley said: “If we do not run the trials in the UK, we do not understand how to administer [the drugs]. If we run the trials, we will see how hospitals diagnose, screen people in and out, and provide access to the care and support that is needed. We get the NHS and our systems ready to deliver these treatments.”
He added: “The Government’s Modern Service Framework for Dementia and Frailty is a once-in-a-generation chance to speed up diagnosis and help more people benefit from research breakthroughs.
“We’ve seen with cancer what’s possible when research investment and participation are prioritised. People affected by dementia deserve that same ambition.”
The charity’s call to action is supported by Stuart Jennings, whose late wife Carol played an invaluable role in Alzheimer’s research in the late 1980s.
Her family showed a strong history of early-onset dementia and gave up many hours for brain scans, blood tests and memory assessments. The work led Professor Sir John Hardy to formulate his “amyloid hypothesis” — the theory behind the first treatments to slow the disease.
Carol (right) played an invaluable role in research into Alzheimer’s. (Image: Alzheimer’s Society)
Stuart, an Alzheimer’s Society vice-president, said: “Carol spent much of her life supporting dementia research because she believed that every breakthrough starts with people who are willing to take part.
“The advances we’re seeing today show what research can achieve, but there’s still much more to do. If we’re to continue that progress, we need more people to get involved in research.
“Every study, every trial and every volunteer helps researchers build a clearer picture of dementia — bringing us closer to better diagnosis, more effective treatments and ultimately a cure.”
Professor Catherine Mummery, director of the UKDTN and an expert in neurology at UCLH, said: “Every day I meet people living with dementia who ask what they can do to help beat it.
“Although there are a growing number of trials in the UK, there are still too few and navigating the research system can be confusing. As a result, many who are willing and able simply do not get the opportunity.”
A Department of Health and Social Care spokesperson said it was looking at options to reduce diagnostic waiting times and provide the best care and support.
They added: “We are also prioritising investment in research, expanding participation in clinical trials, and making the UK a world leader in developing and testing the next generation of dementia treatments.
“This is vital work, which will transform the way our country responds to dementia, and we are grateful to all the charities, research partners, and medical experts who are helping us to develop these plans.”
- For more information and support visit alzheimers.org.uk.
Sue Noakes visited a clinic for regular infusions during the trial (Image: Alzheimer’s Society)
Sue Noakes, 67, was diagnosed with young-onset Alzheimer’s disease in September 2023. The former counsellor noticed that she was forgetting the names of her clients and struggling with spelling.
Both her parents and brother had been diagnosed with dementia, and she knew she had to act when people around her commented on her forgetfulness.
Sue, of West Sussex, received a diagnosis after visiting her GP and a private consultant. She had heard about clinical trials while working for Alzheimer’s Society, so was determined to find a local study she could join.
In late 2023, she was accepted onto a trial for donanemab — one of two drugs recently approved for use in the UK after being found to slow Alzheimer’s.
Sue said: “Taking part in a clinical trial is one of the best things I’ve ever done. I lost both of my parents to different types of dementia so I know just how devastating this disease can be.
“I truly believe research is the only way we’re going to find treatments for as many people as possible. Even if these don’t change my own future, or my brother’s, knowing I’ve played a small part to help others gives me real hope.”
Sue participated in the trial until July this year, visiting a clinic around once a month to receive an intravenous infusion.
She does not yet know whether she was taking the active drug or a placebo. She will find out once everyone in the trial has finished their course of treatment.
Sue said taking part in the research was not always easy, “but every visit made me feel like I was doing something positive rather than just waiting for dementia to take more away from me”.
She added: “The one thing that can stop dementia in its tracks is research, so l would encourage anyone who has the chance to take part to grab the opportunity with both hands.”
Breakthroughs can’t happen without participants, says LAURA ROONEY
Day in and day out, I see the life-changing potential of dementia research, both for families living with dementia today and for future generations.
Research is helping us better understand the diseases that cause dementia, improve diagnosis, and develop new treatments that could slow, stop or even prevent its progression.
Yet one of the biggest challenges remains getting people diagnosed early enough to access support, treatment and research opportunities.
At any one time, one in three people with dementia in the UK do not have a formal diagnosis. Without one, they can miss out on vital care as well as the chance to participate in research.
At the same time, dementia trial participation remains far behind that of other conditions such as cancer, despite dementia being the UK’s biggest killer.
Before joining Alzheimer’s Society, I worked as a cancer research nurse, where conversations about research were a routine part of care. People were regularly offered opportunities to contribute to scientific advances that could benefit them and future generations. Dementia should be no different.
As lead research nurse for the Alzheimer’s Society UK Dementia Trials Network research nurse programme, I see first-hand the difference research participation can make.
Our dementia research nurses support people and families throughout the process, helping them understand what taking part involves and ensuring they can make informed choices.
But scientific breakthroughs cannot happen without participants. We need research opportunities to become a standard part of dementia care, and we need greater government commitment to improving diagnosis, expanding access to trials and investing in dementia research infrastructure across the UK.
We have the science to change the future of dementia. Now we need the political will, and more people aware of how they can take part, to make that future a reality.
— Laura Rooney, head of research participation at Alzheimer’s Society
