Real stories

Learning from lived experience of dementia to make sport more accessible

Tom Benoist is part of the Supporter Care Team at Alzheimer’s Society, as well as being a volunteer. Tom has been drawn to our work due to his lived experience as a young carer for his grandad.

He teamed up with Rich Broadway, one of our Learning Specialists, and a person living with dementia, who has asked not to be identified.

Both Tom and the person with dementia have co-delivered training sessions for Wolverhampton Wanderers, Aston Villa and Wembley matchday staff.

Why did you get involved in the work educating sporting venue staff?

Tom: I am particularly close with my grandad, and we would always go to football together. Grandad loved football since he was a boy, his first live game was soon after the Second World War.

When the dementia started creeping in, his experience at the stadium became very difficult. For example getting through turnstiles and getting support from staff when entering the ground.

Everything he loved about football was stripped away from him by dementia. If the staff had understood, they could have completely transformed his experience.

I genuinely believe this had a knock-on effect with his progression of dementia, as it took away one of the fundamental parts of his life and his week. 

Person with dementia: Although I’m not a sporting enthusiast myself, my wife is. I thought “I have the expertise needed.”

For me sport is as important as Singing for the Brain. It’s like a great music hook. With the sport you love, there’s something you can’t communicate, a connection. 

Our reality is different to the general public by definition. I’ve been fortunate enough that Alzheimer’s Society has involved me. The people with dementia are the ones who understand the reality of living with it. Listen to them. 

What has your role been in this work?

Tom: I’ve been there to offer the perspective of a young former carer and a grandson. It’s a consulting role really, sharing our own experiences and working with incredible people to come up with solutions to difficulties and barriers people face around the ground.

Person with dementia: I am able to give a view of dementia. Looking forward, there should also be someone further in their journey.

My role is to reference my experience and point of view. It gives people an example of what someone can be like with dementia. 

What has been the best part of being involved in this work?

Person with dementia: Being included. Being part of how Alzheimer’s Society is making a huge difference. Meeting people who are striving against this pernicious disease. This work really keeps me going and is very important to me.

Tom: Some good is coming out of the experience Grandad had.

He will be helping other grandads in the future.

The lightbulb moment when you talk to venue staff is really satisfying. You realise that there’s no malicious intent, it’s a lack of knowledge.

The only word I can use is therapeutic. Until now the experiences with my Grandad had hung around my neck. I’d look around the stadium and feel quite sad.

Now I look around and I see people and wonder how we could help them. It’s an amazing opportunity to talk to the people who can change the future for people living with dementia who love sport.

What was the most important message you wanted to share with staff at Wembley and other sporting venues?

Person with dementia: Don’t treat us any differently, treat us with respect. We may have behavioural changes, but deep inside we’re still the same person.

Understand, although we have difficulty communicating, we are valuable members of this society.

Tom: Don’t underestimate the impact you can have on someone’s entire week, not just their matchday experience.

If you work at a turnstile and someone is struggling to scan their ticket, don’t embarrass them, take a minute and help them. Their experience entering the ground can impact their whole day.

The emotional response to that moment can make or break someone’s love of the game. You have the power to keep them going. 

What difference do you believe this work will make?

Person with dementia: A small but important difference. Staff at sporting venues gaining the knowledge of how to communicate with people living with dementia.

Tom: I think it is just as important as when accessibility for physical disabilities was made mandatory. I genuinely believe it could change the landscape for people with hidden disabilities attending sport. Enabling people to continue to do so until they decide they don’t want to anymore.

Sport is such an influential thing in this country. I’d like to see it be a catalyst to break through the stigma of dementia. With Wembley being made dementia friendly, that’s just the start.