Marcel Schreur, the man who came back from the edge of dementia…

The Times: You can’t recover from the illness, so how was Marcel Schreur able to overcome his nightmarish experience of its symptoms?

Marcel Schreur is, by his own admission, a ‘medical phenomenon’. Uniquely, the 55-year-old Dutch-born, London-based artist is in recovery from a condition that presented as vascular dementia, a usually irreversible condition, which he suffered from as a result of reduced blood supply to his brain caused by undergoing radiotherapy for tongue cancer twice – at the ages of 24 and 39.

When we meet in his local restaurant in Norbiton, South London, Schreur is at pains to point out that it would be factually incorrect – as well as unhelpful – to say he is ‘cured’. ‘I still suffer: I still have symptoms,’ he explains. But he is determined to take advantage of his unique position in order to help others – sufferers, carers and those within the medical community.

In 1987, when he was working as the operations manager in London for a Dutch Food producer, Schreur was diagnosed with oral cancer. After surgery at the University Medical Centre Utrecht, he was referred to the Royal Marsden where, given his relatively young age, he was received an increased dosage of radiotherapy in order to give the best chance of eradicating the cancerous cells. Although successful, the treatment resulted in unfortunate consequences for Schreur. The dosage had also damaged cells in the veins in his neck, and in 1999, a full 12 years after his initial diagnosis, blood clots were found in his brain.

‘They didn’t want to operate because it was too dangerous,’ Schreur recalls now. ‘So they said, “Don’t live life like a wallflower: live while you can”. So that’s what I did. And obviously it became worse and worse.’

In 2003 his cancer returned and he had further treatment on his jaw and tongue. Again the success was relative: while he may have been in remission, the damage to the veins in his neck was now a timebomb, severely limiting the amount oxygen that was reaching his brain. Although he didn’t realise it at the time, he was beginning to show the symptoms of vascular dementia: the result of the slow-drip restriction of oxygen to his brain.

Although lucid and articulate in person, Schreur very visibly wears the scars –physically, mentally and emotionally – of his ordeal. He is fashionably dressed, with a scarf that partly hides the signs of surgery on his neck – although he shows no embarrassment in discussing his condition or its effects on him. Indeed, in a video he posted online in support of cancer sufferers, he shows them off in unflinching detail, including the half-dentures that he inserts in his lower jaw, like a benign version of Javier Bardem in Skyfall. This is typical of Schreur: disarmingly open and honest, he is fun and engaging company. I first met him when he donated one of his paintings to an auction to raise money for The Prince’s Trust in 2016 and was immediately struck by his refreshingly matter-of-fact attitude.

What makes his case so exceptional is his ability to describe what dementia feels like, having been to the precipice and, somehow, come back. As he describes it, the effect was as if the brain’s natural filtering-out of irrelevant stimuli had been impaired, resulting in an overwhelming and disorientating wealth of information. ‘When I had the worst of the dementia it was like a thousand images running through my head at the same time, like bees buzzing,’ he says. ‘Obviously that’s not nice. Even now, I see the whole picture but there can be an overflow of input and there is an inability to file it away in the brain. It’s very similar to autism, I think.’

He talks of the fear of the sudden, dramatic losses of mental functioning ­– and his attempts to ‘ground’ himself by seeking out familiar objects or patterns to reconnect himself with. ‘I’m very privileged to be able to delve into things that normally you wouldn’t see,’ he says with remarkable composure. ‘I think people would rather have cancer than face the idea of losing their minds. And for those with dementia, the stress factor of having that fear catalyzes it. For me it would be easier to opt out: I could do that. But the very awakening to the importance of life is enough to live for.’

All of this came to a head in 2011. ‘I felt like I was dying,’ he says. ‘By that time I was living in Germany [in Nordorn in Lower Saxony, close to the border with the Netherlands] and I went to my local GP, who had lost her mother two weeks previously to the same disease. A week later I was seeing a neurologist who scanned my brain, and he said that just down the corridor was a new vein specialist and I could go and see them. Normally each of those stages from one specialist to another would have taken months. But within three weeks I was operated on.’

The specialist discovered that one of his veins was 98% blocked, while the other was 87% closed. Schreur credits the local German GP – Dr Leyla Wagner – with saving his life, but there is no doubt that a remarkable set of circumstances, meaning that he was diagnosed and treated within an absolute minimum of time, were a huge contributing factor in his recovery.

As for that recovery, there is no doubting that Schreur is ‘a walking miracle’, as he describes. By operating on the neck arteries, the oxygenation of his brain was improved and numerous scans both in Germany and the UK have detected no further deterioration. ‘It took about 6 months for the neurons to start reconnecting in my head,’ he says.

All of which sounds fairly prosaic on paper, but as Schreur discusses the details of his recovery, the sheer scale of what he has faced becomes apparent. He remarks one particular milestone, for instance, as simply seeing a chicken in its pen and being able to say ‘That’s a beautiful chicken’ in response: a eureka moment that showed his improving ability to filter and classify the ‘buzz’ of input to his brain.

Whether his condition can accurately be described as ‘dementia’ is a moot point. As Hilda Hayo, Chief Admiral Nurse and CEO of the charity Dementia UK, points out, ‘Dementia is a progressive disease: in other words it gets worse over time. Once the brain cells are severely damaged by dementia, they’re not retrievable – they’re dead. So I suspect they weren’t dead as such, but without a doubt, over a period of time they would have been.’

In other words, Schreur came about as close as it is possible to the brink of developing full-blown, irreversible dementia before the blockage in his veins was treated.

‘That’s an incredible amount of blockage, so the blood flow to the brain isn’t going to get through as it ought to and the brain cells wouldn’t have been getting the right amount of oxygenation,’ says Hayo, who proposes it would be better to say Schreur was ‘showing signs that would be suggestive of dementia.’

‘To have the radiotherapy in his 20s and 30s – to be frank the radiotherapy in those days was not as good as it is nowadays, so it’s a little bit like a sledgehammer to crack a nut,’ she adds.

‘It’s incredibly rare – and each person’s experience of cognitive systems will depend very much on the part of the brain is affected, to what extent and how long,’ says Prof Nick Fox, Professor of Cognitive Neurology at UCLH. ‘Strictly speaking, “dementia” just means the loss of your cognitive functions. The vast majority of dementia is relentlessly progressive, and vascular dementia can be progressive or static. But you can have cognitive problems that mimic dementia and are reversible: people having seizures is an example. The issue is whether the process causing the problems has done some permanent damage. What you’ve got with this sort of case is a critical level of reduced blood profusion, so the brain isn’t functioning, but it’s not gone so far that it’s caused too much permanent damage.’

The experience has engendered a disarmingly practical and optimistic attitude in Schreur. ‘If you’ve stared death in the face as many times as I have – literally, about 10 or 12 times I’ve thought I would draw my last breath – you experience how energy has to be taken away from your brain to keep your ticker going,’ he says. This is still an ongoing, day-to-day process for him ‘There are still symptoms there and I can’t function entirely on my own: I rely on my wife a lot,’ he admits. Indeed, when we meet at a local restaurant, Schreur asks if I found it OK – when I point out that we have met at the same restaurant before, he looks nonplussed. ‘Have we?’

In fact, as inconsequential as it might seem, this remark is key in explaining how Schreur has managed his recovery. ‘I think the biggest secret is that I live without fear,’ he says. ‘Everything that is thrown at me, I think, “OK, that’s interesting: this is how the world works”. I shouldn’t have survived at all, so I don’t worry if I don’t remember things. Normally people go mad if they can’t remember what they did the day before or a couple of hours ago. I just say, “Oh, I don’t remember”. I’ve seen it, done it, got the T-shirt… and now I just see things as a unique opportunity to view life from a different perspective. I’m very fortunate.”

A huge factor in his recovery has been his art, something he only started in 2011, having never before picked up a paintbrush, partly as a means to make sense of the world and his perception of it as his brain started to reconnect.

Now an established artist, having exhibited his work around the world, Schreur has developed a virtual reality installation entitled ‘Life Is Beautiful. Always’ with Dominic Green and Daniel Bacchus of Sheffield Hallam University, which was shown to the public at the London Art Biennale in May.

Reminiscent of a videogame, the viewer navigates their way through familiar ‘levels’ until the graphics start to distort into abstract shapes, a booming soundtrack adding to the sense of disorientation.

‘The VR was originally intended to create awareness, empathy, understanding and to create a shift in the benchmark of thinking about mental and physical health,’ Schreur explains. After showing the work to academics, sufferers, carers and the general public, he began to realise its broader scope and potential – a challenging of the ‘top down’ approach to health care and the chance to offer new insights into the world of the mentally impaired. In so doing, he aims to help society realise that ‘behind all the diagnosis and treatment plans there is a human being’. 

So far, the uptake and feedback has been positive from members of the medical profession. Dr Catie Nagel (GP and course director at the Applied Health Suite at the School of Medicine and Health, University of the Leeds), who states, ‘I have been waiting for something like this and I think every GP and medical student should see this VR experience before they enter practice’.

The work is an abstract representation of his experience of dementia, where moments of detachment from reality, often accompanied by periods of terrifying confusion, can last for hours, days and even months – but there is a positive message, in which ‘one reawakens to see the beauty of life once more.’

Significantly, the response from sufferers suggests that the program has applications beyond Schreur’s own personal experiences – people with a range of conditions, including Bipolar disorder, Aspergers, Autism, cancer and drug addiction have all said how the installation replicated their own feelings of disorientation and inability to communicate their situation – as well as Schreur’s own 6-year-old granddaughter, who is deaf.

His ultimate hope is that the medical profession will use it to train professionals and help patients, drawing from his own firsthand frustrations. ‘Most people haven’t survived as long as I have, so everything is new – if I go to a doctor, there is very little or no reference material they can use,’ he says.

‘It is not easy for anyone to get their head around everything that went on, and that is ongoing. Partly because there is, on various levels, no precedent; partly because of uber-specialisation… and because I am me. What does a medical phenomenon do? Live! To the full, whenever possible. Always in a hurry, not looking backwards but forwards…. Although it might seem trivial, it is actually fundamental in my case: for the sake of survival.’

The VR work and art installation ‘Life Is Beautiful. Always’ was shown as part of London Art Biennale ; ;