If dementia lies ahead, do I want to know?

Brain deterioration can begin in our forties. A new test can detect and predict it. But do you really want the answer decades in advance?

As we age we get that prickling feeling — could I be losing it? If you are, would you really want to know before it happens? Picture: iStock

Past 40 your body has a way of issuing subtle alarm signals to remind you that you are no spring chicken. There’s the odd ache here and twinge there, the increasing need for reading glasses and the realisation that you can’t do two late nights in a row.

If you’re not 50 yet, just wait. Invitations to NHS [National Health Service] screening sessions become more frequent, your body begins to creak and it takes a while to progress beyond a shuffle when you get up.

However, it’s the rising forgetfulness — losing your car keys and phone, missing birthdays and meetings — that causes the most creeping anxiety. It’s probably brain fog from feeling frazzled, but what if you really are starting to lose it?

In the UK there are about 850,000 people with dementia, an umbrella term for a group of conditions that affect the brain, causing memory loss and other changes to brain function, and the Alzheimer’s Society projects this will rise to 1.6 million by 2040. “Will I be one of them?” is the question that haunts most people, myself included, as we get older.

In theory, the odds are on my side. I try to do the right things to stay healthy. I take at least 18,000 steps a day of walking or running and do other exercise (yoga, reformer pilates and a killer weekly circuit) on top, I eat well most of the time, have never smoked and sleep a full eight hours every night. I drink, but not excessively, rarely sit when I’m not working, and don’t consider myself too stressed. There is no family history of dementia and several of my female relatives have lived active lives until they were just under or over 100.

Brain fog

Yet I’m not without nagging doubt. For starters, I am 53. Increasing age is a risk factor for all diseases that damage the brain, including dementia and Alzheimer’s, and the fifties, I am told by Dr Karen Harrison Dening, the head of research at Dementia UK, is the prime age for undetected deterioration to start. Sometimes — when I think about it, increasingly — I forget to do things if I don’t write them down, but brush it off as menopausal brain fog. A few years ago a freak accident involving a heavy loft hatch falling on my head from considerable height as we attempted to extract Christmas decorations from the attic has left me wondering if there was more lasting damage than the severe concussion I suffered at the time.

All of this means that an invitation to try a new test that assesses my risk of pre-dementia, including early signs that you might be at risk of Alzheimer’s, is as frightening a prospect as it is intriguing. The integrated cognitive awareness (CognICA) test developed by the British start-up Cognetivity Neurosciences, a spin-off from Cambridge University, provides a score that tells you your likely risk of getting dementia before you show any of the symptoms.

The test assesses the risk of pre-dementia, including early signs you may be at risk of Alzheimer’s. Picture: Thinkstock

Since most people with dementia aren’t diagnosed until their seventies or eighties, usually when family members and friends notice worrying signs, CognICA could be a game-changer for early detection. It’s not a diagnosis but a red flag for brain changes underpinning the disease that are thought to start decades before. “A lot of research is focusing on looking for biomarkers for dementia,” Harrison Dening says. “And some of those are present in people still in their thirties and forties.”

Unlike tests such as the Montreal cognitive assessment, a screening assessment widely used within the NHS for detecting cognitive impairment, the CognICA test is quick and, appealingly for those prone to exam anxiety, uses an iPad rather than pen and paper. It doesn’t require you to recall lists of words or to copy drawings. Indeed, rather than assessing memory, it focuses on testing the speed of visual processing, one of the first skills to decline in the early stages of dementia. It does this using artificial intelligence developed from research on people with early-onset dementia to produce an overall risk score that takes into account age, ethnicity and lifestyle.

Are you ready for answers?

“Memory is not the best indicator for early-stage dementia,” says Dr Tom Sawyer, the chief operating officer at Cognetivity Neurosciences. “Because memory is subject to neuroplasticity, the brain finds ways to remember information which can mask its deterioration for a considerable time.”

Already the CognICA test is being used remotely by a brain health clinic, the first of its kind to focus on early diagnosis of patients with Alzheimer’s, run by the South London and Maudsley NHS Foundation Trust, and is being trialled by Birmingham and Solihull Mental Health NHS Foundation Trust as part of its dementia care pathway. In the US it has been registered for marketing by the Food and Drug Administration. As yet, it is not widely available and you would need to access it via your GP, but Sawyer says there is potential for it to be incorporated into annual health checks for the over-50s, another to add to a list that includes blood pressure, hearing, eyesight and cholesterol levels. Still, when I tell her that I am taking the CognICA test, Harrison Dening’s voice registers surprise verging on concern. “Really? That’s very brave of you,” she says. It reinforces my main worry. What will I do with the information it provides?

Decades of angst

There are some things you wonder if you are better off not knowing, and being told you might get an incurable disease decades before it begins to have any impact on your life is one of them. Despite many clinical trials on different drugs, there is still none that can halt or cure dementia and there are few effective treatments for slowing the condition. Harrison Dening says there is the potential for results of tests for the earliest signs of neurodegenerative disease to “introduce 15 to 20 years of angst in people who take them”.

Then again, an early warning sign at least provides the opportunity for lifestyle changes that might reduce your long-term risk and ultimately provide earlier access to treatment and support.

Cognitive health is a very good indicator of other things that might be going wrong in the body. Picture: Supplied

“We know from research that changes happening in the brain that are associated with the diseases that cause dementia can occur 15 years before symptoms appear,” says Sian Gregory, the research information manager for the Alzheimer’s Society. “Early detection is vital and blood sample tests looking for proteins associated with the disease are an important step forward, but we welcome any advances in detecting signs of dementia as early as possible.”

If nothing else, cognitive health is a very good indicator of other things that might be going wrong in the body. Issues with inflammation or circulation, for example, often manifest themselves early on as cognitive decline. “There is no sure-fire way of preventing dementia because it is so complex, but researchers have identified 12 risk factors that we can do something about, which include reducing exposure to smoke and air pollution and cutting down on alcohol,” Gregory says. “In general, what is good for the heart and circulatory health is also good for the head.”

There are some things you wonder if you are better off not knowing, and being told you might get an incurable disease decades before it begins to have any impact on your life is one of them.

Impossible to cheat

Handing me the iPad, Sawyer says that the assessment is usually “semi-supervised” by a doctor or nurse and is cheat-proof. “There is no learning effect and no therapeutic effect,” he says. “It has been designed so that it is impossible to cheat.”

After a brief practice session, the test starts and on the screen flash various images in super-quick succession – what look like fuzzy, moving QR codes are replaced by flashes of a train or building, a bear or a flamingo – the aim being to pick out those that contain animals as quickly as you can. If I spot an animal, I am to tap the right-hand side of the screen; anything else, it’s the left.

It sounds no more challenging than the tasks set on a brain training app, but the images whiz on and off screen at lightning speed. “The idea is that you are exposed to an image for 100 milliseconds and your brain extracts relevant information,” Sawyer says. “Your retina, visual cortex, pre-frontal cortex and other parts of the brain are all engaged very quickly.” It is, he says, challenging the CPU of my brain rather than the hard drive.

Why are images of animals used? Sawyer says that dozens of studies have shown how our visual processing systems, like those of primates, have evolved to recognise animals instinctively. “Even if we haven’t seen a bear or an alligator in real life, it is a fundamental and consistent function of the human brain to recognise they are animals,” he says. “Consistency is incredibly important in early detection tests and recognition of animals is a cross-cultural and cross-societal phenomenon, so is universally relevant.”

I know I make mistakes. A duck appears and I click the wrong side of the screen. It happens again. Sawyer assures me that the CognICA technology allows for a margin of error. I hand him the iPad at the end of the test and he inputs a pass code to get my score. What it will tell me is the “probability of my risk of existing impairment”, he says. Anything under 50 per cent and I’m screwed.

Never too late

“We deliberately use a very uncomplicated scale and below 50 is an alarm signal,” Sawyer says. “To a doctor or nurse it would be a sign that a patient probably needs more attention.” When it appears on the screen, in glorious green, my score of 90 per cent is more of a relief than I imagined it would be. “It means we are 90 per cent sure you are at low risk of dementia,” Sawyer says.

In truth, it has told me more than that. It has crystallised the need to do what I can to keep dementia at bay, not just for myself but for my family. My mother-in-law died of dementia-related illness and I am all too aware of the tragic course it can entail.

“Age and genes are prime risk factors for dementia, but about 40 per cent of cases are linked to lifestyle,” Harrison Dening says. “It is never too late to make improvements to your dietary and exercise habits, but neither is it too early and we need to instil the benefits of adopting healthy habits as early in life as possible, teaching our children that this is the way to protect our brains for the future."

The Times