What’s it like to take part in drug trials for dementia?
Explainer
Alzheimer's Research UK
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On 20 May 2025
“If the clinical trials I’ve taken part in help people in the future, then I’m glad I took part,” says Alzheimer’s Research UK supporter Marian Wheeler.
When Marian was diagnosed with Alzheimer’s disease aged 69, she was told there were drugs to help with her symptoms. However, there was nothing to slow the progression of the disease itself.
So Marian and her husband, Geoff, searched for clinical trials testing dementia treatments which might offer hope for the future.
Since then, Marian has taken part in three different drug trials with Geoff supporting as her study partner. We asked them to share their experience of taking part in dementia research.
Why is taking part in dementia clinical trials important to you?
Geoff: “When your loved one gets an Alzheimer’s diagnosis you feel desperate, and you think ‘what can we do?’. It was a huge shock. We were stepping into the unknown.
“As a husband, I felt I needed to do everything possible to support Marian. For us that meant getting involved in dementia research.
Marian: “We thought if our daughters get dementia, then the research taking place now might help them have a better experience later. It will not only help them if they get it, but other people too.”
Geoff: “We’ve never missed an appointment because we know how important dementia research is. We hoped that the drug trials we’ve been on might slow the disease. If so, we’d be helping to make history with effective treatments for Alzheimer’s.
“There was a more selfless motive too. Even if the drugs weren’t effective, they might further the understanding of dementia and help scientists to find drugs that work.”
Geoff: “When you start a trial, you’ll usually have your first appointment with the Principal Investigator. This is the scientist in charge of the study. You discuss the details of the study with them and sign a consent form to make sure you’re happy to take part.
“Even if you agree to take part and begin on the trial, you can change your mind at any point. This doesn’t affect your medical care or chances of taking part in other research studies.
“After your first appointment, you’re seen by the medical team who conduct tests, take blood samples, and deliver the treatments. It’s important to have initial tests to make sure you’re suitable for the trial. Ongoing tests help the researchers see if the medication is safe and effective, too.”
“We’ve made over 150 journeys for assessments, screenings, treatments and MRI and PET scans for all the trials we’ve participated in. We always combined our appointments with trips out in London to make a day of our travels.”
Marian: “I just tried to do what they asked me to each appointment. I’ve had so many scans over the years that I got used to it.
“The doctors and nurses were always very gentle with me. They made me feel comfortable, like giving me ear protection from any noise the scanners make.”
Marian being administered an infusion on a drug trial by a nurse
Geoff: “The decision to take part in a clinical trial is a finely balanced one. It’s not for everyone and that’s okay. We weighed the risks against the potential benefits. Looking back, we’ve seen a positive impact in our lives because we took part.
“It’s been a significant commitment. We needed regular contact with the study coordinators so we could discuss the trials or arrangements, like travel requirements and expenses. Considering the practicalities is crucial.”
Marian: “Ultimately, we felt the knowledge gained from me taking part in dementia research was worth it, so they can carry that on for people in the future.
“Geoff has been my study partner throughout. He’s very knowledgeable and has always been there for me. Having a committed study partner is important, especially if you’re living with dementia like I am.”
Before any type of research study can start to recruit volunteers, it must go through a strict ethical approval process. This helps to ensure that the chance of risk or harm to volunteers who take part is minimised.
Before taking part in a research study, a volunteer must give informed consent after being told about the research study in depth, what will be involved and given the opportunity to ask questions. A volunteer can also withdraw at any time should they wish to.
Strict screening assessments and repeated tests during involvement in a clinical trial help to ensure a volunteer is a suitable candidate for the study, their safety and to measure and monitor for possible side effects while they take part.
What were some of the benefits of taking part?
Geoff: “In one trial, after they collected their initial study data, we found out Marian had been on the placebo, or dummy drug. Because there was evidence that the drug could be effective, she then took the active treatment in something called the open label phase. This wouldn’t have been possible had she not been part of the original trial.
“We’re often asked whether we think the trials have made a difference. We can’t know for sure, but Marian is doing well over a decade after her diagnosis, so we believe that it has.
“You’re so well looked after with regular blood tests and scans throughout too. They found Marian had some osteoporosis that we wouldn’t have known about otherwise. The extra information and data shared with us about her health has been a real benefit.”
What would you say to someone who was considering taking part in dementia research?
Marian: “I want to encourage other people to take part in dementia research. That’s how we’ll get closer to a cure.”
Geoff: “To anyone considering getting involved in research, I’d say go for it. There are lots of different types of research – it doesn’t have to be a clinical trial that you take part in.
“Dementia is a progressive condition. It’s hard to watch someone you love decline. So, for us, taking part in clinical trials was a positive thing to do.
“Being involved in research means you see things first hand that might one day make a real difference to everyone affected by dementia.”
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Just 1% of people who could take part in clinical trials for dementia research do so.
More than ever, we need people to take part in research studies so we can create a world free from the fear, harm and heartbreak of dementia.
Alzheimer’s Research UK is a partner charity of Join Dementia Research. You can find out more and sign up here: taking part in research or by calling us on 0300 111 5111.
About the author
Alzheimer's Research UK
You are certainly putting pressure on readers who are frightened about dementia taking hold and therefore ready to assist in trials (and donate) even though we are assured that it will take many years before effective drugs will be found.
Hi Stan, thank you for your comment.
We understand that dementia is a deeply personal and often frightening condition. We are truly sorry if any of our messages have felt overwhelming or pressured. Our aim is to provide clear, honest information about the urgent need for participation in research while recognising the real emotions and concerns that many people face.
It’s true that research can take many years and progress can sometimes feel slow. But every trial supporting this cause brings us closer to the breakthroughs we need. We are profoundly grateful to everyone who chooses to support dementia research, whether by volunteering for studies, sharing experiences, or donating. These actions are meaningful and they help lay the groundwork for future discoveries.
I heard on the radio this morning 26/05/25 that in Oxford they have had some very good results on their research. I am afraid I have forgotten which department was mentioned but I would be interested in a trial. I would be grateful if you could tell me how do I find out and to progress forwards.?
With thanks Rosemary Ker
Hi Rosemary, thank you for your comment and your interest in getting involved with dementia research.
The best way to find out about taking part in dementia research studies is through a nationwide register called Join Dementia Research. When you register, you provide some personal details about your health, age, and contact details. These details are then used to match you to studies that you are suitable to take part in. Research studies are done online and face-to-face. Once registered, you can log into your account to take part in online studies, and you will be contacted by a researcher if you’re eligible to take part in a face-to-face study.
Join Dementia Research is not a research study itself but a place to find out what studies you can take part in and enrol to take part. Signing up to the register is not a commitment to take part in any particular study, it just allows research studies to find willing volunteers.
You can find out more and register to Join Dementia Research here: https://www.joindementiaresearch.nihr.ac.uk/, or by calling us on 0300 111 5 111 (9-5pm Monday to Friday). The registration process takes 10-15 minutes over the phone.
I’m very interested in learning more, about this trial, I have many family sufferingly members dementia
Hi Llana, thank you for your interest in participating in dementia research. We are sorry to hear about your family members suffering with dementia.
Alzheimer’s Research UK is a partner charity of Join Dementia Research. You can find out more and sign up here: https://www.joindementiaresearch.nihr.ac.uk/home?login or by calling us on 0300 111 5 111.
Great information
This information has been so helpful and supportive. I am at the early stage where I am increasingly losing the ability to think straight and at times feeling spaced out. The worst thing is I am so worried and afraid that I shall end up with bad dementia.
Hi Susan, I’m sorry to hear about your concerns about you memory and thinking, but glad you found our information helpful. We have more information about what to do if you’re worried about your memory and thinking here: alzheimersresearchuk.org/dementia-information/getting-a-dementia-diagnosis/
Alternatively, you can give us a ring on 0300 111 5111 or email infoline@alzheimersresearchuk.org
I cared for my mum who was diagnosed with Altzimers/Dementia, for almost 3 year I never had help as mum didn’t like strangers and never had a day away from her apart from when she had two TIA’s and then just a few days… and due to her wandering I slept on a makeshift bed on the door near her to stop her being in danger. It is a cruel disease, taking memories, and day to day thinking away. I wouldn’t want anyone to go through this disease so I am ready to assist in trials as I know it’s the right thing to do. I am almost 70 mum has been gone 3 yrs in April 2026. So why not do something for others before it’s too late !
Hi,
My wife Rachael (55) was diagnosed with Alzheimer’s in September 2024. We have tried to get on a few trials but have been knocked back due to a problem related to Alzheimer’s. The disease has left her with homonymous hemianopia and this is badly affecting our trials chances.
Currently we have had a screening for MK1167 although the Trontier trials look really good.
Hopefully we can still keep applying to try to help find a cure for this awful disease.
Hi Neil, thank you for your comment and for sharing your experience. We are sorry to hear about Rachael’s diagnosis of Alzheimer’s disease.
By taking part in dementia research studies, it’s people like you and Rachael who will make finding a cure for dementia possible.
Unfortunately, due to Rachael’s homonymous hemianopia, this causes additional safety concerns when enrolling into clinical trials. This may affect Rachael’s ability to join the trontier clinical trials. However, researchers may still assess suitability on a case-by-case basis.
I suffer from early onset dementia so at present have a relatively normal life with some restrictions. I would like to find out more about the trials and my husband is most supportive of this as it may may help him in the future. I am happy to help with research not only to possibly reduced my condition but to help all future sufferers
Hi Jill, thank you for your comment. We are sorry to hear about your dementia diagnosis.
hank you for your interest in taking part in dementia research studies. It’s people like you who will make finding a cure for dementia possible.
The best way to find out about this is through an NHS service called Join Dementia Research. You can find out more on our website: https://www.alzheimersresearchuk.org/research/getting-involved-in-research/
If your children would prefer to talk to someone and sign up over the phone, they can give us a call on 0300 111 5111.