Real stories

People affected by dementia interview Blood Biomarker Challenge researchers

Anita Goundry, who lives in County Durham with young-onset Alzheimer’s and vascular dementia, and Tom Lawless, a Research Network volunteer in Dorset, interviewed lead researchers from each Blood Biomarker Challenge team. 

They spoke to Professor Vanessa Raymont from READ-OUT and Professor Jonathan Schott from ADAPT. 

READ-OUT includes Dementias Platform UK researchers at Oxford and Cambridge universities and is looking at tests for a range of types of dementia. ADAPT, at University College London, is focusing on the most promising biomarker for Alzheimer’s. 

The Blood Biomarker Challenge is a multimillion-pound award from Alzheimer’s Society, Alzheimer’s Research UK, the National Institute for Health and Research, and Gates Ventures, including £5 million raised by players of People’s Postcode Lottery.

Anita: During the next five years, who’ll be prioritised to receive the blood tests you’re investigating? Will people who have a family history of dementia be able to get tested?

Vanessa: One of the drivers is to get more data around blood biomarker levels in a real world population. 

That means we’re primarily targeting people attending a memory clinic, so they will already have a level of suspected memory impairment. They may or may not have a family history. 

We want to make sure that we gather information from as broad a population as possible. These biomarkers look like they’re pretty good. What we lack is data about how well testing for them works in certain ethnic groups, the very elderly and people who have other medical problems, like kidney disease. 

So we’re going to be quite inclusive, but it will mostly be people who are attending memory clinics.

Anita: After you’ve established which tests will work, who will benefit from them – especially since we don’t yet have treatments that can help everyone? 

Jonathan: The idea is that they would be rolled out to anybody who might benefit. 

We know from research that there’s enormous value in a diagnosis, even if there are no specific treatments. 

People who are worried about objective problems want to know what the cause is. It’s very different to be diagnosed with Alzheimer’s disease than being told that you have memory problems, but that the cause is uncertain. 

We want to allow people as much certainty as we can, so they can plan and get access to treatments, clinical trials and appropriate support. 

We’re all excited about new treatments coming down the block – we’re making unbelievable progress. We need to prepare the NHS to be able to deliver these.

Tom: How can you be sure what levels of biomarkers mean a person is likely to have dementia? 

Vanessa: We are focused on people who have some level of objective impairment of their cognition and memory. 

We are not saying that these tests are at a point where we do them on their own, or use them to screen the general population. 

Often you’re detecting quite low levels, and you have to draw some type of line where you say this person likely has a disease or they don’t. What these projects will do is help define where those lines are in different groups of people. 

But to diagnose dementia, you have to have a whole load of other information. A brain scan and other tests to establish there’s nothing else going on that could be causing some of those problems. And a proper assessment to establish how bad your memory is, how much of it is affecting your day-to-day life, and other things that could be affecting that, like anxiety or depression. 

Jonathan: The blood tests are trying to rule in or rule out the presence of abnormal brain proteins which are associated with these illnesses. As Vanessa says, you don’t make a diagnosis based on this alone, it’s taken in the correct clinical context.

Tom: During these studies, how quickly will you share a person’s blood test results? 

Jonathan: People coming to a memory service who want to take part in the ADAPT study will give a sample of blood and do some questionnaires. They’ll then return to see their memory clinic at three months and 12 months. 

At three months, half of the people will be selected at random. Their doctor will get the blood test result, and we’ll interpret it and feed it back to that patient as they see fit. The other half will receive it at 12 months.

So we will be able to do a completely fair comparison of whether giving the blood test result early increases the diagnosis rate early, and whether that impacts on what other tests are provided, as well as how it’s viewed by patients and clinicians. 

Vanessa: READ-OUT has a first stage where we’re collecting lots of data on a range of biomarkers for not only Alzheimer’s dementia but Lewy body dementia, frontotemporal dementia and so on. 

For the last two years, we’ll be doing a trial similar to the one ADAPT is doing. The difference is that we will be comparing people who get their biomarker status two weeks after the blood test and those who do not get it at all. 

Both projects will also be gathering data about the health economic impact of getting your biomarker status. 

We’re already working with commissioners of local services to work out what that needs to look like, so that hopefully these tests can be rolled out very quickly afterwards.