“These are big, strong men who kept fit after they stopped playing.”
Professor Willie Stewart is describing the challenge of caring for the footballers who developed dementia in the decades after they stopped playing.
Care home staff who are more used to looking after frail elderly residents are often unprepared for men who have maintained a good degree of fitness through golf or other sports. “Families do their best for as long as they can,” he says.
It is a cruel irony that their bodies can remain relatively healthy while dementia “ravages” the brain. Any suggestions that the illness was associated with drinking to excess or smoking are unfounded and upsetting for families, says the Newton Mearns based consultant neuropathologist.
He brings up a slide on his computer showing how the disease has shrunk away the hippocampus, which play a key role in the processing of memories. In another, a thin membrane that sits between the right and left sides of the brain is torn and split, something that he says is commonly seen in footballers.
“The unfortunate position I have got is that I get to see what the brain looks like after someone has had dementia for several years, “ says Prof Stewart, who is an honorary professor at the University of Glasgow.
“The damage, the loss of brain cells - it’s a horrible disease.”
He keeps in touch with the families who entrust the remains of loved ones to him for his ground-breaking research, which was the first to prove a causal link between football and neurological diseases including dementia. His studies later showed that defenders - the players most likely to head the ball - were five times at risk.
Earlier this year, Denis Law revealed he had been diagnosed with mixed dementia and said he was certain that headers caused his illness.
Sometimes the information Prof Stewart passes back to relatives can be difficult to hear, he says, but mostly they feel relief that he can affirm their own belief that the illness was caused by the sport.
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“Doctors are still telling former players that their dementia is not related to football,” he says.
Around 40% of dementias are thought to be preventable and this one definitely is, says the professor, whose coffee cup reads ‘If in doubt sit them out’ the slogan associated with new concussion guidelines introduced in 2015 in Scotland to protect players of all sports from the risks of head injury.
More specifically, they aim to cut the risk of Chronic traumatic encephalopathy (CTE) a progressive brain condition that’s thought to be caused by repeated blows to the head and was one known as dementia pugilistica.
It is associated with contact sports, such as boxing or rugby however there there is now - thanks to Prof Stewart and his team - far more extensive evidence of its links with football.
The research group he is part of has been running for around 50 years and was initially focussed on trying to find out what happens after someone suffers a brain injury.
“For the first 30 years, that was really about the first day, hour or week after you get hit by a car or are involved in a fight. In the last 15 or so years, when I’ve been looking after the group I’ve been thinking more about decades down the line when you begin to see this link to dementia.
“So people who been hit by a car or have been assaulted have a risk of dementia but also we are seeing more and more people who have participated in contact sports have a higher risk of dementia.
“The reason why I find this so fascinating and so important is that firstly if brain injury is the problem, it’s entirely preventable. So this is a form of dementia that unlike others is one that we can prevent.
“The Lancet Commission said that 3% of dementias in the community are a result of brain injury so if we can take out 3% of dementias...just by changing sport, we can prevent footballers and rugby players getting dementia.”
He believes that in a few years “if not sooner” everyone who visits their GP over a certain age will be given a percentage risk for dementia in a similar way to heart disease, which is based on factors such as cholesterol, blood pressure and family history.
“Particularly those who can say my mother or father had dementia. We tend to overlook the brain. We think about diabetes and hearts and blood pressure.”
However, he is less optimistic about treatments for the disease.
“Sadly many decades of research in dementia, has produced lots of drug treatments but none of them work. We are treating people 20-30 years after the disease has taken hold and by that time it’s too late.
“The focus of research has really been what does the brain of someone with dementia look like and that’s important but that’s the end stage of disease when the brain has been ravaged by the illness.
“What we are now doing is shifting the attention from people who got a diagnosis to the years before they got a diagnosis.
“What could be much more effective is the approach we have had in other diseases and that is to prevent it happening in the first place.
“If we can’t prevent it (with treatment) can we spot the signs early enough to change the course of disease or can come up with a really smart test or scan that can spot early signs in someone in their 40s and 50s and give them life skills to reduce their risk. Or maybe then we can come up with magic drug, something we haven’t thought of yet that could prevent the disease developing.”
The next phase of his team's studies is focussed on former rugby players aged 40-60 who are being given detailed scans and tests to try to establish if something is happening in their brains that isn’t seen in others of a similar age.
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He will be working alongside Professor Craig Ritchie of Brain Health Scotland, which was launched in 2020 with the dedicated remit of dementia prevention - one of the only initiatives of its kind across the world. He says the website should be the first port of call for anyone keen to take steps to minimise their risk of dementia.
Regular exercise, eating a balanced Mediterranean diet, maintaining social connections, learning new skills, avoiding smoking or drinking to excess and trying to lessen stress are all said to be beneficial for maintaining brain health.
“From my point of view, avoiding as much head impact as possible will go a long way,” adds Prof Stewart.
He is keen to set up a support group for former and current professional sports men and women who, understandably may be concerned about the risks and has also been involved in discussions with Scotland’s football governing body that are focussed on removing as much head impact as possible from the game.
The SFA led the way two years ago by introducing a ban on children under 12 heading the ball but he acknowledges that the prospect of removing headers from the game completely is challenging both "politically and philosophically".
“The (negative) comments tend to come from people who probably haven’t played the sport and don’t really understand the issues and may not have had the experience of dementia.”
Earlier this week lawyers acting on behalf of Former Scotland international Jason Roach signalled their intention to pursue legal action against rugby authorities claiming they failed to protect players from the risk of neurological conditions including dementia.
The 50-year-old, who has been diagnosed with early onset dementia, is among ten players planning to launch a group action against the Rugby Football League.
The sport’s governing body says it continues to improve and develop its approach to head injury prevention as scientific evidence evolves.
“The rules of American Football have changed and every season the fans keep coming back. Rugby tweaks its rules continuously and some work and some don’t.
“Football has been the slowest...yet but I think we are going to see the training approach change though, in months.
“English football has already started talking about reductions in heading in training and think we are going to see that happening here very very soon.
“We’ve got to keep the conversation going, we’ve seen the evidence. This is entirely preventable.”
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