WIDOWER, Alex Burton, 65, a father of three, was an electronic engineer on military aircraft in the Royal Navy.

He was diagnosed with early onset Alzheimer’s in 2011.

“I live alone, although my three children visit very regularly. A couple of years before I was diagnosed I started to notice that I was turning up to meetings on the wrong days.

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"So I knew there was something wrong. I went to see my GP who dismissed it saying everyone forgets their keys. And that’s fine so long as you know you’re looking for keys.

“People say to me you don’t look like you have dementia and that annoys me. I have problems from the moment I wake up. I have living nightmares. I’m out of bed and they’re terrifying.

"I have electronic devices so my family know where I am at any one time. Every day is a challenge. Short term memory is a problem. I can remember everything from 30 years ago, but I can’t remember names I’ve just heard or conversations I’ve just had.

"Everyone has left a cold cup of tea, but when you have dementia you can’t remember making a cup of tea. Cooking also becomes a problem trying to put together a few elements, so I’ve stopped.

“Because I’d been part of my wife’s cancer care until her death in 2001, the diagnosis didn’t come as a threat to me, more it was the way I was told. I was handed a prescription and that was it. It was all very clinical. But I wanted to know what came next. There was no support.

“I went back to the GP to ask where’s the support and he said ‘me’. With all great respect he’s not a dementia specialist. So I sat and sulked for 10 months. I didn’t know a great deal about dementia, so I came out of hiding and went gathering info from anyone who knew anything about it. I knew there was no cure and after 12 months I realized that there was no support either.

"The Alzheimer’s Society has advisors, but they’re not specialists. I thought there can’t just be me who is in this situation in Lancashire. So I founded a group, Lancashire Dementia Voices in 2014 to help people like me.

"Its main aims are to work with practitioners to involve people with dementia in the decision making. I gave a presentation at Westminster to Andy Burnham and Norman Lamb and I held up a blank piece of paper and said, ‘This is my care plan’. And they all agreed with me, but I didn’t want them to do that.

“Things have got to change because the dementia situation is escalating. There are about 120,000 sufferers in Lancashire and we have a higher proportion than anywhere in the north west.

“There are 100 different types of dementia. The government has appointed a cancer tsar, but that has not happened with dementia. We need a strategy, diagnosis rates need to improve. I want to see a proper pathway from the minute someone is diagnosed. I want to know that if I have a problem I can pick up a phone and talk to someone.

“I try not to look into the future. There’s such a lot of ignorance around dementia. People raise their voice when they’re talking to you and start making hand signals. It’s lack of understanding and education.

“It’s my personal ambition to push dementia out of the cupboard. It’s not acceptable to dump us and tell us to get on with it.”