Ever worry that your forgetfulness is a sign of something more serious? Earlier this week, I spent 20 minutes completing a free online test, by a leading UK research charity, that gives you an instant assessment of your dementia risk. It’s a digital version of the types of assessments carried out in NHS memory clinics – cognitive exercises which measure attention, visual perception, and a person’s ability to recall information after a period of several minutes. The test has now been taken by more than 200,000 people and the charity, the Food for the Brain Foundation, has received government funding to expand it across the country.
At the age of 36, I’m unlikely to develop dementia anytime soon, but I have a vested interest in my long-term brain health given that the disease runs in my family. I’ll admit I felt some trepidation as I clicked on the link to begin, but then was pleased to discover I scored well (your result is either low, small, significant or high risk).
The foundation’s idea is that by taking such tests, perhaps at yearly intervals over a prolonged period of time, we will be able to pick up early signs of impairment as soon as possible, and leading dementia researchers agree.
“Those sorts of tests can give you some indication of current cognitive deterioration,” says Julie Williams, professor of neuropsychological genetics at Cardiff University.
The need for more accessible dementia testing in the UK has long been apparent, with postcode lotteries meaning that many people struggle to get an in-person appointment at NHS memory clinics. The more specific hospital tests required to hone in on a particular form of dementia, like Alzheimer’s disease, are even harder to access. The UK has a notoriously limited capacity for carrying out PET scans, for example, compared with other high-income nations.
According to the Alzheimer’s Society, more than a third of people living with dementia do not even have a diagnosis. “Even for the two thirds that do, it’s very rare that the diagnosis is early and specific,” says Richard Oakley, the charity’s associate director of research and innovation. “Those figures would be considered completely unacceptable for other conditions like cancer, so they should be unacceptable for dementia.”
I can attest to the limitations of the current system. When my father was confirmed to have dementia two years ago, he did manage to access a NHS memory clinic, but the assessment merely elicited the vaguest of diagnoses and a suggestion to take a prescription medication for Alzheimer’s. It was only after paying for private imaging scans that we found that his cognitive decline was most likely to be more driven by vascular disease.
Such information can be significant, with some studies suggesting that lifestyle changes based around controlling cholesterol, blood sugar and being physically active, can slow progression of this particular form of dementia.
But significant improvements in dementia testing are coming.
Blood tests and finger pricks
Last year, a series of NHS centres across the UK launched a major new clinical trial called ADAPT. It aims to assess whether a blood test can help doctors achieve earlier and more accurate diagnoses for Alzheimer’s disease.
The test measures the levels of a particular protein called p-tau217, now regarded around the world as one of the most promising biomarkers for not only diagnosing Alzheimer’s, but predicting a person’s risk of developing the disease in the next few years. Oakley is hopeful that if the results from ADAPT are positive, it could be used more widely in the UK in the relatively near future.
“A future where you could make diagnoses with a cognitive assessment and a blood test,” he says, “would remove the need for invasive or expensive procedures.”
Some researchers are already investigating ways to measure p-tau217 in dried blood samples from a simple finger-prick, which could be collected by posting a kit to a person’s home. Going forward, such tests may even enable a variety of blood-based proteins to be measured, all revealing different pieces of information about why someone is experiencing cognitive decline – and allowing specialists to personalise treatment.
“This kind of information would be really helpful, because if there’s amyloid and high p-tau217 that indicates Alzheimer’s,” says Amanda Heslegrave, a principal research fellow at the UK Dementia Research Institute at University College London. “But if there’s no amyloid, and you’ve got neurodegeneration and high inflammation, you know there’s something else going on.”
Testing for Alzheimer’s genes
In 2024, I visited the human longevity clinic in San Diego to have my genome sequenced and assess my own lifetime risk of Alzheimer’s, based on variants of a gene called APOE. People who carry two copies of a certain variant are now known to be virtually 100 per cent certain to get Alzheimer’s at some point in their lives, as well as responding less well to certain Alzheimer’s treatments.
For me, it turns out that I fared relatively well in the genetic lottery of life, at least for Alzheimer’s. It was a relief – but what if the result had been different?
Because of this, experts are divided on the ethics of taking such tests, at least until we have better and more available therapeutics which can either prevent or stop Alzheimer’s in its tracks. While the emergence of the drugs lecenemab and donenamab made headlines in 2023, neither drug is available on the NHS, and at best, they have only been shown to elicit modest improvements when it comes to slowing Alzheimer’s. On the one hand, it might unnecessarily drive anxiety, while the counterargument is that it might enable people to make different life decisions.
“In the absence of a therapy that really has a major effect, it’s a very personal choice when it comes to whether you want to know or not,” says Bruce Yanker, professor of genetics and neurology at Harvard Medical School.
A test to confirm you don’t have Alzheimer’s
Not all cases of mid-later life cognitive impairment are linked to Alzheimer’s or dementia. With this in mind, the pharmaceutical company Roche Diagnostics has developed a very different blood test – which can rule out Alzheimer’s as a possible cause with an apparent 98 per cent accuracy.
The advantage is that people could potentially focus more on certain lifestyle changes, such as exercise, changing dietary and sleep habits, and addressing certain mental health issues to see if this improves their cognition. “There are many causes of cognitive decline, many of which are just transitory,” says Yankner. “Not enough sleep and depression for example.”
While most of the work around dementia testing has focused on Alzheimer’s, Heslegrave is also optimistic that blood-based tests might also start to emerge for various other causes of cognitive decline such as Parkinson’s, or different forms of dementia. She points to ongoing research attempting to identify proteins which can pinpoint vascular dementia or frontotemporal dementia, which afflicts Hollywood actor Bruce Willis.
“ I feel like it’s going to move very quickly,” she says. “While Alzheimer’s is the most common, most people don’t just have Alzheimer’s on its own, so it’s important to be able to diagnose these other diseases.
“While everyone previously assumed you could never detect Alzheimer’s in the blood, we now realise that we can measure anything, if we try hard enough.”
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