Real stories

‘Wonderful, but different’: how life has changed since I was diagnosed with young-onset dementia

Steve’s life changed dramatically when he was diagnosed with dementia in his 50s and he had to give up his career as a long-distance lorry driver.

But over time, and with his wife Carmel's unwavering support, he says that he has built a positive outlook. 

He's enjoying retirement, including becoming a dementia campaigner to help advocate for people with young-onset dementia.  

What was life like before you developed dementia symptoms?

‘Life was absolutely fantastic. I had the life of Riley, to be honest.

‘I was working as a lorry driver – a job I started in my early 20s. I was a long-distance driver, spending weeks away from home and my wife Carmel.

‘An average trip was between six and eight weeks and then I’d come back for a week.

I was travelling all over, including the Middle East, North Africa and Scandinavia. I absolutely loved it.

‘I learned several languages. My company was based in Germany, and I was fluent in German and had good French, Spanish and a bit of Italian.

‘At home, we ran a dog kennel and also bred dogs. Carmel managed most of this and took part in dog shows because I was away so much.’

Who were you before your dementia diagnosis? 

‘In my mid-50s, when I was back home, Carmel spotted that my concentration wasn’t good.

‘She said I wasn’t taking interest in conversations. If we sat down to watch TV, I would stare at the screen not taking anything in.

‘I hadn’t noticed all this and just put it down to tiredness.

‘But when my company got involved and said I wasn’t keeping records correctly, I started taking it more seriously. 

I couldn’t work out why I was making mistakes when I knew my job inside-out.

‘The more I tried to concentrate, the harder it became.

‘The first time I saw a doctor, they just put it down to my age and lifestyle.

‘But my problems progressed, and I ended up going back to the doctor two more times. After the third visit, I was referred straight to a consultant.

‘Alzheimer’s disease wasn’t what we expected – I don’t know what we did expect but not this.’

Who are you since your dementia diagnosis?

‘I was floored by my diagnosis and went to a dark place.

‘But gradually, over 12 months, I rebuilt my outlook.

Joining a peer support group helped me. They built me up and empowered me. Carmel has been absolutely golden.

‘I’ve become a dementia activist and I’m involved with dementia research. 

‘I want to get my name and my voice out there. I want to raise awareness about the realities of dementia and advocate for people with young-onset dementia.

‘I stay busy at home. I do some farming – we keep a few cattle and we’re still breeding dogs. I’m also a judge for the Irish Kennel Club. I love walking in the mountains. It keeps my head clear.

‘Carmel and I have planned ahead for the future, so now we can just enjoy life.

‘People are always shocked when I tell them dementia is the best thing that ever happened to me.

‘But it’s given me a wonderful but different lifestyle. Without it, I’d still be doing my job and away from home.’