How football and charity are trying to help fans with Alzheimer's attend games (2024)

It’s the ostensibly simple things that Steve Freer can find tricky.

To get into a football match in 2023, chances are you will have to use a QR code scanner of some description at the turnstiles. Once inside, you’ll want a drink, but at a lot of grounds these days, you have to order from a screen: often, you can’t just go up and ask someone for a coffee or a beer. Then, when the drink has done its job, you’ll need to visit the toilet, after which you’ll have to find your way back to your seat.

All sounds relatively straightforward. But a few days before Christmas 2017, Steve was diagnosed with dementia.

Before one game, he didn’t get the QR code scan quite right, got confused when it didn’t work and the turnstile jammed. Impatient fans behind him heckled. He struggles with the food and drink screens. Ordering from a person would be easier. When coming back from the toilet, he often can’t remember whether to go left or right to get back to his seat.

For most people, problems like that can be inconvenient and annoying. But for Steve, they could be the difference between a good day and an awful one.

It’s difficult to understate how important sport is to Steve. He can play tennis a few times a week now, after hip and ankle operations a few years ago. He used to love cricket, although his enthusiasm has waned a little recently.

But football is the biggest. He’s a Leicester City season ticket holder. Has been for years. He sometimes goes with his son, sometimes with his wife, Carol. He sits with the same group of people every week, some in the couple of rows behind, a couple in front. He calls them ‘the Hooligans’. They all know to keep an eye on him, in case he wanders off. He feels safe there, because he knows his surroundings, knows the people around him, and knows they are watching out for him.

Other people living with dementia might not have that sort of support network, so find the very idea of going to a football match too much to even contemplate. If you’ve been going to games all your life and, as it is for many of us, the game forms a huge part of your identity, it’s a potentially crushing thing to lose. One of the cruelties of a disease like Alzheimer’s is that it makes your world smaller, limiting the things you can do, silently but viciously shutting off parts of your life.

But Steve and Carol are working with the Alzheimer’s Society to change that, to just make it a little easier for people living with the disease to get to games, to keep that crucial part of their lives open.

It’s probably best to start with some basics. Specifically, the difference between Alzheimer’s and dementia.

“Dementia is an umbrella term that refers to a variety of conditions that cause disease in the brain,” says Matt Hughes-Short, the strategic change programme manager at the Alzheimer’s Society.

“There are more than 100 different diseases under that, the most common being Alzheimer’s, vascular dementia and dementia with Lewy bodies. We often say that if you meet one person with dementia… you’ve met one person with dementia: everybody’s experience is very different.”

When you think of dementia or Alzheimer’s, you probably think of memory loss, which is certainly one of the most prominent symptoms. But there are plenty more, including mood and personality changes, confusion, limited concentration and apathy, and an unwillingness to do the things a person might usually do.

“We use the bookcase analogy,” says Hughes-Short. “If you imagine a shelf with books on it, the books nearest to you are your short-term memories and the ones furthest away are your longer-term memories. Dementia essentially knocks books off that shelf. The short-term memories you would usually connect with disappear. So people might be able to remember going to a Manchester City game years ago, but they can’t remember what they had for breakfast.”

There are more than 900,000 people in the UK living with dementia. As a rule, it tends to affect people over 65, but its symptoms can become apparent well before that.

The Alzheimer’s Society is an official charity partner of the FA. You may have seen a couple of their campaigns recently, such as when three of the England women’s team wore shirts without their names on the back, to symbolise the one in three people born in the UK today who will go on to develop dementia. The men’s team also wore nameless shirts in their friendly against Switzerland in 2022.

Hughes-Short is part of the charity’s Sport United Against Dementia Board, which, earlier this year, published a guide for sports venues on how to make the matchday experience better for people living with dementia.

Because there are so many things that could be obstacles between people like Steve, and enjoying a day at the football.

“With most things being digital now, some people might have difficulty actually getting a ticket,” says Hughes-Short, emphasising that the first place all of this has to start is on the websites of clubs and venues. The act of buying a ticket could very easily be the difference between someone with dementia going to a game or not.

“I went to a game recently where you had to have the ticket sent to your Google Wallet, then to access the ticket you had to scan a QR code at the stadium: I, as a 33-year-old man, found that process quite complicated, but for someone living with dementia who potentially have severe cognitive issues, that whole digital process could be incredibly overwhelming.”

Turnstiles are an issue too. “Carers are often left with quite a difficult choice — do they go first, leaving their loved one on the other side of the turnstile, potentially struggling with their ticket, or do they let them go first and potentially get swallowed up into the big stadium experience, where it’s easy to get lost or wander off.

“Finding your way to your seat is also potentially a real challenge. One of the symptoms of dementia that people tend to be less aware of is perception issues: so they could be walking down some steps and their depth perception isn’t what it used to be.”

These are all theoretically small things, all of which can be addressed by clubs or sporting venues changing little things about their layout, or making signage clearer, or allowing people with dementia to use the accessible doors usually reserved for those with more visually obvious physical disabilities.

But the biggest thing that Hughes-Short and the Alzheimer’s Society are trying to do is change broader attitudes. To make stewards, catering staff, police, other fans — basically anyone you would find at a football stadium — more aware of the problems that someone with dementia might encounter.

“It’s important to feel like they can educate supporters around them. Very few people understand the prevalence and what dementia is.

“Sometimes stewards mean well, but sometimes they can be abrasive and they can give people living with dementia a bad experience.

“I went to one game with someone who had trouble getting through the turnstiles, and the steward was very hostile to him. I said to the steward that this person had dementia, and the reply was, ‘It doesn’t matter, everyone finds it difficult going through the turnstiles’.”

That’s the sort of thing that Liam Boylan is trying to change. He is the stadium director at Wembley, which essentially means he’s in charge of anything that happens there that doesn’t involve figuring out who to play alongside Declan Rice in midfield.

For a big game at Wembley, there are usually around 5,000 staff. Most of them will not be permanent, just brought in for the occasion. It might be tricky to ensure everyone is as switched on to the needs people with dementia have.

“The one thing we always ensure is that our supervisors, who are all in-house, get the message,” says Boylan. “The job of the senior management team on a matchday isn’t to stand around in hospitality, but to do the miles, walk the floor, make sure the message is always passed on. I can’t guarantee all 5,000 staff are going to be on their game, but I can guarantee all our supervisory staff will know the message.”

Boylan is conscious of the fact that at most vaguely modern venues, the facilities available for people with physical disabilities are obvious: accessible entrances, wheelchair places in the stands, toilets and so on. Those with less visually immediate issues need to be catered for too.

“Venues are switching on to this,” he says. “You’ll see on all the accessible toilets stickers that say, ‘Not all disabilities are visible’. Staff are absolutely forbidden, if someone says, ‘Can you open that door?’, from saying no.

“Initially people thought of things like sensory rooms as something for neurodivergent people, but they’re now realising what those rooms are and what they can be used for. For people with dementia, it’s a safe place to break away and re-set.”

Hughes-Short brings up sensory rooms too. “It’s about making sure people still feel like they belong,” he says. “There will be some who say, ‘I can’t be in the stands, it’s too overwhelming’. You need to cater to a range of people with dementia, and if you do that you will also make the experience better for many other people with cognitive conditions too.”

It’s all designed to encourage people to do things they think they might not be able to do — like attending football games, even ones at Wembley. Boylan stresses that, if anyone in this position does think they will need help at Wembley, to get in touch before a game and ask what they can do. All of their customer service and ticket staff are in-house, so they know the venue, and what they can provide.

This is all a process. Nobody has nailed it yet. But people are trying.

“As the national stadium, we should be driving this stuff,” says Boylan. “I don’t think we’re the leaders yet, but we’re getting there. We just want to keep learning.”

One of the reasons that sport in general — and football specifically — is so important to people living with dementia is how effective it is for cognitive stimulation.

“It’s absolutely massive and can’t really be understated,” says Hughes-Short. “For people living with dementia, they want to be able to say, ‘I remember where I was when the 1966 World Cup final was played’. People can reconnect with feelings — they will remember how they felt after a goal or whatever.”

Many groups work in this area, such as Sporting Memories, which uses sport and talks about it to help many people, not just those with dementia. Talking is great, but being able to attend games is much better.

It’s about familiarity too. Noise is often a big problem for people living with dementia, which is where sensory rooms can help. But Steve can cope with the noise of a football crowd because he knows it. It’s familiar and comfortable to him. If Carol drops a plate at home then he reacts badly, but at the football it’s fine.

There’s escapism, too: for 90 minutes, you’re not a person with dementia, you’re a football fan, in the same place as 50,000 other people just like you and, to a point, your problems are at home.

Perhaps most of all though, it’s about normality. If you’ve been going to football all your life and suddenly the prospect of that being taken away from you appears, your world changes. Going to a match every other week keeps at least some things as they were.

Jon has a sort of bustling bonhomie that makes you both warm to him personally and feel entirely reassured you’re in good hands. He’s Wembley’s customer engagement manager and accessibility lead, which is a stiff way of saying he’s the guy who makes sure everything goes smoothly for people who need help.

He was in touch with Carol for a few days before England’s Euro 2024 qualifier against Malta, a game she and Steve were invited to as part of the Alzheimer’s Society’s attempts to improve things at stadiums around the country.

Jon walked her through how they would be helping them, from where they would be dropped off to guiding them into the stadium and avoiding the hectic confusion of the standard turnstiles. He even took them right to their seats.

He’s there at the end of the game too, as Steve and Carol leave a little early to avoid the overwhelming crowds. He also doggedly sorts out some minor confusion as to where the car picking them up is.

This sort of experience is not typical, and perhaps you wouldn’t expect it to be. But even venues that don’t have Wembley’s resources can do little things. At Leicester, Steve doesn’t use those QR code-activated turnstiles anymore but gets in through the accessible entrance with the help of a steward who knows them. It all helps. It all makes things just a little bit easier.

And it’s part of a wider initiative that Steve and Carol, Hughes-Short, Boylan and the Alzheimer’s Society are all involved in. Carol has travelled to many parts of the country and visited several clubs with Hughes-Short to educate them. Some have been quicker on the uptake than others, but it’s all helping, it’s gradual, and we’re getting there.

Steve enjoys the game as England win 2-0. He tuts at the occasional theatrics on the pitch, speculating on what he would do if any of the kids he used to coach tried to pull something like that. He coached his son’s youth team from the under-sevens right through to under-17s. A couple of years ago, they put on a charity game to raise money for Alzheimer’s research: every single one of the boys he coached, apart from one, who lives in New Zealand, showed up.

Steve is doing OK. He wasn’t a few years ago, before his diagnosis: Carol knew something was wrong, but didn’t know what. It took watching Alan Shearer’s 2017 documentary Dementia, Football and Me to push them to get a proper diagnosis. “That was a real turning point for us,” Carol says. “We were nowhere before that.“

Then they at least knew what was wrong, even if medically there isn’t a huge amount that can be done. What they can do is make life a little easier, for Steve and the thousands like him, which is what all this is about.

Carol is a gentle force of nature. She could quite easily claim to have enough on her plate, holding down her job and making sure Steve is OK. But she has thrown herself into the work that the Alzheimer’s Society is doing, just to try to make things a little bit easier.

Just a little bit easier.

To find out more about how Alzheimer’s Society and The FA are working together to support fans affected by dementia, visit alzheimers.org.uk/fa.

(Photos: Catherine Ivill/Getty Images and Nick Miller)