Marianne: I follow research into dementia not through choice but necessity. Both my parents died of dementia and for five years I cared for my mother. From my perspective, the speed of research has seemed to be glacial.
Ivan: As a clinical scientist I see a real need for progress in dementia research – it is difficult to work with people showing symptoms of dementia where there are few treatments to offer. In the last 10-15 years, there have been advances though. There is now evidence that some treatments are interacting with what we believe are the causes of the disease – amyloid and tau proteins. The impact of these treatments has been limited because we have only been able to test the treatments on individuals showing clinical symptoms of dementia.
We need to focus potential treatments early in the disease process and so we need to be able to identify individuals as early as possible based on their biological data. This will help us understand individual variation in how quickly the disease progresses.
Marianne: It’s exciting to hear about treatments where there is evidence of some impact on individuals and the potential of applying these early in the disease progression. If dementia starts 20 years before the symptoms show, then I may be at that ‘pre-clinical’ stage now. I’ve been part of cohort studies for a number of years and I will do whatever I can to progress discoveries in dementia. If there are potential treatments that might slow progression of dementia, I would of course consider being tested and involved in trials. Targeting individual volunteers with new trial treatments to see the value of the intervention gives me real hope.
Ivan: We’ve not had the opportunity to test these interventions with volunteers who we know are at a high risk of developing dementia. Using volunteers from cohort studies means that by using their existing biological data we can narrow down the people who are at risk of developing symptoms in about 5-10 years and test what impact these interventions have on the path of disease progression in new highly-specific trials.
Marianne: This sounds like a decision point for volunteers. They may need time to consider taking part in such trials, but if they do agree, they are giving informed consent.
Ivan: With DPUK’s Great Minds register we’re keen to include everyone from a cohort study because we’re focused on precision medicine – the impact of an intervention on an individual. Dementia is not a single disease – the underlying causes will be quite varied, so one treatment may work for one and not for another.
Marianne: This sounds much more positive to me than anything I’ve heard in quite a long time. I’ve seen drugs failing, but had not understood that sometimes this is because testing on volunteers only takes place late in the progress of the disease – when symptoms show. It give me great hope that we are now in a position to test these treatments at an earlier stage in the disease when researchers believe they will have greatest impact.
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Five members of the public, all committed to the fight against dementia, recently joined us round the table in London. They shared with us their perspectives of what is critical for volunteers to know before joining research studies. We discovered that clear communication around data security and the volunteer’s control over their contribution is vital to build trust.