Life with dementia: 'I understand where this is going, but I'm making the most of what I've got'

John sitting on zoom
John saw an improvement in life when he accessed assistance and guidance from charities like Platfform.
  • By ITV Wales Production Journalist Eugenia Taylor

An ex-airline pilot with dementia has said he "wouldn't be here" if it wasn't for the support he received from local charity services.

John Mahon was diagnosed with early-onset dementia in 2018 which caused his mental health to plummet and he became very antisocial.

Young-onset dementia is defined by the World Health Organisation as the onset of symptoms before the age of 65 years and it accounts for up to 9% of dementia cases in the world.

Four years ago, John went for his pilot routine monthly medical check with an aviation medical examiner and was told he had high blood pressure.

"High blood pressure in your brain is going to do some damage, it rolls on from there. That to me was the start of what was happening in my brain", John explained.

"Then I did a couple of scans and I realised it was something more serious than that."

After receiving his diagnosis at 64 years of age, John felt his "life had ended" and he had "no idea where his life was going to go".

"That's where part of my brain thought, 'yeah there's nothing left. What do you do with your life?'", he said.

"Being diagnosed with Alzheimer's is the end of your life effectively. With Alzheimer's, what also comes is a big bucket of depression."

  • John's experience of depression, post-diagnosis.

But he attributes an improvement to his outlook on life and overall health to the assistance he's received over the years from local NHS services such as the young-onset dementia team in Cardiff and the mental health charity Platfform.

He said: "The support teams say no actually that's not true, there are ways around this. You can live your life.

"Before this, I would be up in my bedroom and I wouldn't want to get out, I would be sleeping, I didn't want anyone talking to me and I wouldn't even think of going out."

Dementia has physical, psychological, social and economic impacts, not only for people living with dementia but also for their carers, families and society at large.

According to the NHS, approximately 42,000 people in Wales have dementia. It is most common among older people.

Originally from Dublin, Ireland, John moved to Wales 30 years ago and made Cardiff his home.

He says he travelled all over the world throughout his years working as an airline pilot.

But the highlight of his career was teaching the lead singer of Iron Maiden, Bruce Dickinson, how to fly a 757 airplane.

John carried out command training with Bruce Dickinson, the lead singer of Iron Maiden, pictured above. Credit: PA

Eventually, after his diagnosis, John engaged with Dewi his support worker from Platfform which John says improved his quality of life immediately.

"Now it's ideal, I can tell within ten minutes when Dewi is going to arrive at my door.

"It can be something as silly as- it's a rainy day, let's go for a walk at Cosmeston lakes", he said.

And despite hitting the lowest point in his life, John now tries to find humour in every situation and conversation.

"I have in the past got away with two heart attacks, Alzheimer's and God knows what else.

"My son has a list, he always says to me what else can this man catch?

"I fully understand where this is going, but I'm determined to make the most of what I've got.

"It keeps me going. I don't think about my brain. My sense of humour is my best asset I think", he chuckled.

  • John Mahon - on how he feels about life now.

John says he now wants other people to know that there is help out there for those struggling with dementia and that the support he has received has enabled him to manage his illness in a healthy way.

The charity is now launching a first of its kind website called 'Effro', which offers dementia support as well as opportunities for enhancing life and enjoying it to the full.

John said: “It’s great to have that ongoing support from when you first get diagnosed and the connection between the NHS teams and Effro helps with getting used to what is happening with me.

"Because there is no cure for Alzheimer's it all comes down to the support you receive that really makes a difference. It was absolutely vital.

"I wouldn't be here if it wasn't for that."

Rob McMillan, Service Manager at Platfform said: "While it may not be easy to come to terms with a diagnosis, dementia doesn’t mean the end of a happy, fulfilling life.

"We recognise we cannot reach everyone in person, so we’ve moved many of our resources online so that more people can access and benefit from our materials and training.”