Andre’s legacy – what he taught us about inclusion and being brave

There are some people who change a place simply by being part of it. Andre was one of those people.

Andre came to The Maltings day service at a time when his world was changing fast. His devastating diagnosis of frontotemporal dementia – and the rapid progression of his condition – meant that communication quickly became the biggest barrier he was facing. But what never changed was who he was. His humour and the way he connected with people around him, that sparkle in his eye, was there til the end.

From the start, we were determined that Andre wouldn’t be defined by what was being taken away. Our focus was always on what he could still do and what mattered to him.

Pushing back at the barriers

Working with Andre often felt like a tug of war with dementia. Each time his condition put a barrier in the way, we tried to push back – adapting, learning and finding new ways forward. Sometimes it felt like we’d got one over on it. Other times, the condition caught up again. But along the way, there were so many positives.

Andre continued to spend time with his peers, even as his abilities changed. If he no longer wanted to bowl, he still came along with his friends. If swimming became too much, he stayed part of the day – sitting with friends, sharing lunch and enjoying being there. What mattered wasn’t ticking off activities, but making sure Andre still felt included and connected.

Nothing was ever forced. We watched carefully and adapted sessions so that Andre’s life still looked and felt ordinary – just at a different pace.

Finding his voice

One of the most important breakthroughs for Andre was access to a specialist communication tablet. As verbal communication became harder for him, the tablet gave Andre a clear way to express what he wanted and didn’t want – from food choices to how he spent his time.

That support was made possible through the generosity of FitzRoy supporters, via the Above and Beyond Fund – something that went on to make a lasting difference not just for Andre, but for others at The Maltings too.

That simple ability to say yes or no made a huge difference. It allowed Andre to stay in control of his own life for longer. It also reminded us of something fundamental – that communication isn’t a “nice to have”. It’s an essential.

Andre picked it up quickly, and the tablet became part of his everyday life. Today, that same device is still in use at The Maltings, supporting other people to communicate their choices and have control over their own lives. That, to us, feels like a real legacy.

Inclusion that feels natural

Andre was never treated differently because of who he was. He was part of the group – full stop. We built relationships that were genuine and natural, not defined by labels or roles.

We were thoughtful about who supported Andre on different days, making sure the dynamics felt right, like family or friendships and all the ordinary relationships we all experience in our day-to-day lives. That sense of belonging mattered more than any programme or plan.

What Andre taught us

Andre taught us a lot!

He taught us that inclusion isn’t about doing everything – it’s about opportunity and being there.
He taught us that communication can change everything.
He taught us to be brave, creative and instinctive – even when we were working outside our usual experience.
And he reminded us that every day really is a school day.

Supporting Andre also meant supporting his family – being there in the good moments and the difficult ones, staying honest and connected, as well as recognising that care doesn’t stop at the door of the day service.

Sam, Andre’s mum, used to work at The Maltings alongside me as a support worker. Life took her in a different direction for a time, but now that she has moved closer again, she and The Maltings will always be intertwined. She knows we are here for her – and in turn, she is already volunteering with us. Sam is a powerhouse and we are incredibly grateful that she continues to be part of our community in a way that suits her.

A legacy that continues

Andre’s impact didn’t end when he stopped attending The Maltings – and it certainly hasn’t ended now he has passed away. His story has already helped raise awareness of young-onset dementia, challenged assumptions and contributed to wider conversations about care, communication and inclusion.

Here at The Maltings, his legacy lives on in very practical ways – through the tools we use, the confidence of our team and the way we approach supporting people whose needs are changing.

Most of all, it lives on in the relationships he built and the memories he leaves behind.

We are deeply grateful to Sam and the rest of Andre’s family for trusting us to be part of his journey and for their generosity in allowing his story to continue helping others.

Andre taught us what it really means to see the person – and we will carry that with us always.

Rest in power Andre. We miss you and we will remember you always.

Toby,

Deputy Manager

The Maltings