Research
Researchers need people like you to help find new dementia treatments
New dementia drugs can only be developed with the help of people who volunteer to take part in research.
We had nothing to lose and possibly lots to gain.
As the availability of new Alzheimer’s drugs is debated, the words of one couple taking part in research cut through a lot of noise.
‘The memory clinic had said there were no more drugs that would be suitable for my husband,’ says the participant’s wife.
‘He signed up initially for the aducanumab study, which was stopped earlier this year.
‘When we found out about the donanemab trial, it was a real glimmer of hope.’
The couple, in Buckinghamshire, are taking part in the Trailblazer trial at the Imperial Memory Unit in London’s Charing Cross Hospital.
Something new
Despite the complexities about who may benefit from each potential new treatment, one thing is clear – these drugs are starting to do something that’s never been done before.
Drugs such as donanemab and lecanemab are ‘disease modifying’. Rather than simply easing the symptoms of dementia, these new drugs promise to actually slow down one of the diseases that cause it.
‘We had read of good results from earlier trials of donanemab and were keen to hopefully take advantage of it whilst still in the early stages of the disease,’ say the Buckinghamshire participants.
‘This, coupled with the kindness and professionalism of all the staff on the unit, made us want to continue there.
Whenever we visit the unit, we are always welcomed and everything that will happen that day is spelled out, and all questions and concerns are answered.
Katharine, another participant’s wife, adds, ‘Nick has only recently started on the Trailblazer study and had his first infusion in August.
‘The team at the unit have been very informative, helpful and kind.’
Range of studies
Ida Wallin, Research Assistant at the Imperial Memory Unit, says a number of new drugs are being tested there.
‘People living with Alzheimer’s and cognitive impairment are at the heart of our work and mission.
Our goal is to offer a range of different studies, in order for people to access disease-modifying treatments in a trial that suits them.
‘The screening period for these trials typically spans a few months, involving multiple visits for blood tests, scans and memory assessments. We are currently in the early stages of the Trailblazer trial – we remain open for new participants to join this and other ongoing trials.’
The Imperial Memory Unit is one of hundreds of study sites that have found volunteers through Join Dementia Research.
Registering with Join Dementia Research means you can be matched with researchers looking for people like you. There are all kinds of studies, seeking people who don’t have dementia as well as those who do.
At the forefront of dementia research
We’re still a distance from having effective treatments for everyone with dementia. But the only way there involves many more studies that build on what we’ve learned so far.
There are 127 potential new dementia drugs in clinical trials around the world, and they all rely on people taking part.
‘To anyone considering participating,’ says Ida, ‘I would say that your involvement is vital.
‘Clinical research cannot progress without the bravery and generosity of participants like you. By taking part, you are contributing to the potential discovery of treatments that could benefit not just yourself, but countless others in the future.
‘It is a unique opportunity to be at the forefront of medical innovation.’
The message from the Buckinghamshire participants is briefer but no less powerful:
If in doubt, go for it!
Research needs you
Call 0333 150 3456 and ask for the Join Dementia Research helpdesk or email [email protected]