In 2015, at just 50 years old, Peter Berry was diagnosed with early-onset Alzheimer's disease. Faced with an uncertain future, he struggled with severe depression and even attempted to take his own life.

But what could have been the end of his story became the start of a remarkable new chapter. Determined not to be defined by his diagnosis, Peter rediscovered his passion for cycling, and with this, a renewed sense of purpose.

Along the way, he met Deb Bunt, whom he introduced to cycling. The pair quickly formed a close friendship and have gone on to complete several fundraising challenges together. They have also co-authored three books and spoken at numerous events across the country, sharing a powerful message that it is possible to live well with dementia.

As Peter eloquently puts it: "I've built a wonderful castle out of the rubble that is my dementia diagnosis."

Here, Peter and Deb talk to The Care Social's Sarah Clarke about Peter's journey to an Alzheimer's diagnosis and how their advocacy work has helped change perceptions of dementia.

Could you tell me about your work and family life prior to your diagnosis?

My father founded a timber business in Suffolk in 1947 and, when he was in his mid-sixties, he was diagnosed with Alzheimer's disease. I took over the company and went on to run it for around 25 years. It was a successful business and one that I really enjoyed leading. As for my family, I have four brothers, one of whom sadly passed away many years ago. I have been married to my wife, Teresa, for several years, and together we have a daughter, Kate, who is 31 years old.

Like your father, you were diagnosed with Alzheimer’s at a young age. When did you start noticing symptoms?

I didn’t notice any symptoms at first – it was my wife who noticed. I’d always had a good head for business. I could easily remember measurements and figures, and I hardly wrote anything down.

Over time, I could no longer keep things in my head, and I was making lots of mistakes. My secretary, Rita, covered me for a long while, helping put right what had gone wrong. But then one day my wife came into the office and saw lots of Post-it notes stuck everywhere. That’s when she went down the road of thinking something wasn’t quite right.

What happened next? Did you decide to visit your GP?

I did, but it took quite a few years to receive a diagnosis. Some of that was down to the health system, but I have to take some of the responsibility because I was pretending that I didn’t have Alzheimer’s. I did quite a good job of fooling everybody.

But then I had lots of brain scans, and I realised I couldn’t hide it anymore – the evidence was there. This meant that I lost my driving licences – my car, lorry and motorbike licences – and I found myself unable to work and, eventually, the business was closed.

How did you cope with losing your business so suddenly?

To be honest, what I found more stressful than the diagnosis itself was the lack of support afterwards. What some people fail to remember is that when people are diagnosed at a young age, like I was, they still have to earn a living.

I couldn’t get any money from the benefit system because I was considered “too well”, and the critical illness insurance I took out on the mortgage didn’t cover Alzheimer’s.

I had savings and a private pension, but I couldn’t access this before I turned 55. So, I ended up working in the sawmill for a short time while someone else ran the business. I was demoted from being the head of the business and employing nearly 30 people, to pushing a broom around the yard. That was very demoralising, so I ended up chucking the broom down and walking out one day, and I never went back.

I became very depressed that year and I made two suicide attempts, largely because of how the system treated me.

What were the key drivers that helped you turn a corner?

I realised that if nobody was helping me, then nobody was helping others in my situation either. I decided that maybe I could be the one to step up and make a difference. I've always been a keen cyclist, so I decided to cycle from Wales to the east coast of England to show people that if I could still do this, so can you. I raised some money for charity along the way and that was the first thing that gave me some real ‘oomph’.

What is it about cycling that has helped you to live well with dementia?

When I'm on a bike, I become Peter the cyclist and not Peter, the man with dementia. Cycling freed me from being chained to the condition.

How did you and Deb meet each other?

Deb: I’ve only known Peter post diagnosis, so this is the Peter I know. My husband and I moved to Suffolk eight years ago without knowing anybody who lived here. One day, I popped into our local cycling shop and Peter was there. He’d just cycled from Aberystwyth to Aldeburgh in Suffolk and we started chatting.

I’d always been a keen runner, and he introduced me to cycling, and our friendship grew from there. I listened to him talk about his dementia journey and I think my perspective on life changed.

Peter: At that time, my wife, Teresa, was still working three days a week. She was reassured that Deb was there to support me when she wasn’t around, helping me maintain my independence.

The two of you have since written three books together. How has this experience impacted your wellbeing?

Deb: We’ve written them together in the sense that I’ve written down Peter’s spoken words. Peter no longer reads books, not because he can’t read, but because if he reads a sentence then he immediately forgets it and that can be very frustrating for him.

Writing has given me a sense of fulfilment. We’ve also spoken at several events and my confidence has increased dramatically. That’s what Peter’s friendship has given me. It’s a reciprocal thing.

What other projects have you worked on to raise awareness around dementia?

Deb: We’ve continued to take part in cycling challenges for charity, including cycling to London and back up to Suffolk. Peter also abseiled down the Orbital Tower in London for Alzheimer’s Research UK and then he decided he wanted to cycle 100 miles in a day on his penny farthing, so he did that too.

We’ve also given talks to health professionals. During one webinar, we spoke to 200 GPs about the diagnosis process and what they could do differently. And we’ve travelled around Europe, giving talks to various people and organisations about living well with dementia.

Peter: Many people assume that living well with dementia is complicated, but it doesn't have to be. Yes, you can cycle hundreds of miles, but you can just as easily enjoy gardening, swimming, walking, or simply sharing a cup of tea and a laugh with someone. That's what we try to help people understand; the reality of dementia is often very different from people's perceptions of it.

We also encourage people to think differently about communication. Many are unsure how to talk to someone with dementia, but if we can adapt our language to enter a child's world, why do we struggle to do the same for someone with memory problems? Instead of testing their memory by asking, "Do you know who I am?", simply offer a helpful cue: "Hello, it's Sophie here." Small changes like that can make a big difference.

Have you seen many friends or family members disappear from your life because they don’t know how to talk to you?

Yes. I come from a large family, but these days I only see a small number of them.

The same thing happened to my father. When he reached the later stages of the disease, he moved into a care home, but hardly anyone went to see him. Family members would say that whenever he asked where his mother was, they had to tell him she had died, which would upset him. Rather than face this, they stopped visiting altogether. But if they had simply said that his mother was out on an errand and would be back later, he would have moved on.

Often, when you visit people with advanced dementia and ask them about their early life, you’ll find that all of a sudden, they’ll talk to you for hours, sharing memories and stories. By the time you leave, they’re a different person because you’ve lit every firework in their brain. We owe it to people with memory loss, to enter their worlds.

Could you tell me about the impact your work has had on health professionals? Have you made them rethink their approach to diagnosis?

Deb: One of the endorsements in our second book is from a GP who said: “All doctors need to read this book”. He believes the impact of our work is profound and told us told us that it has prompted him to rethink the way diagnoses are communicated to patients.

Peter: What I’ve said to GPs in the past is that they need to deliver a diagnosis in the same way that they’d want to receive one themselves. If they don’t approach it in that way, then that person is going to go away confused and frightened about their future.

You must be so proud of what you have achieved…

Peter: Yes, but I wouldn’t be able to do it without Deb’s support, and she wouldn’t be able to do it without me. It’s a mutual thing. I’m pleased that we’ve been able to improve things a little for people facing a diagnosis in the future.  Reflecting on what we’ve achieved, it’s really been quite wonderful. As I’ve said in the past, I’ve built a wonderful castle out of the rubble that is my dementia diagnosis.