One man diagnosed with Lewy body dementia has urged people to get a proper diagnosis and to know that there is life after it.

59-year-old Kevin Quaid was first diagnosed with Parkinson's disease when he was 50, and then subsequently diagnosed with Lewy body dementia.

Lewy body dementia is caused by clumps of protein forming inside brain cells that affect thinking, visual perception and muscle movement.

The Lewy Body Ireland charity is to launch later this year to give people specific information about the disease.

Mr Quaid told Moncrieff the word 'dementia' is an umbrella term.

"The name 'cancer' covers a whole variety of different cancers - and 'dementia' covers about 400 different types of dementias," he said.

Alzheimer's is obviously the most common form, but Lewy body dementia is slowly but surely becoming the second most common form in the world.

"The problem with Lewy body dementia is memory problems are not my biggest problem.

"You could talk to me for the next hour, and if you were to guess what was wrong with me the last thing you'd say is that I have dementia.

"I don't seem to have memory problems, I don't show the signs that people with Alzheimer’s would show.

"That is where the problem lies in stigma: when you hear people [say], 'Oh they have dementia' they automatically assume that that's memory - and that's Alzheimer’s.

"It couldn't be further from the truth".

'Sleep behaviour disorder'

Mr Quaid said he was diagnosed following a DaT scan.

"I didn't hear the word 'Lewy', I didn't hear the word 'body', I just heard the word 'dementia'" he said.

"And I said, 'You have to be wrong because my memory is fine'.

"The main problem is I haven't been able to drive in seven years because my spatial awareness would be completely gone.

"I suffer from a thing called REM sleep behaviour disorder... when I'm asleep at night my muscles don't paralyse.

"Two of the biggest problems with Lewy body dementia are horrific nightmares - they are as real as I am talking to you this minute - and hallucinations.

"When I am having these nightmares, the problem is I can lash out, I can get out of bed.

"I have awoken in the middle of the night... [in] a foetal position, crying, not knowing who I am, where I am, not knowing who the person alongside me is".

'Horrific nights'

Mr Quaid said he is 'terrified' to wake his wife beside him.

"I can see my wife as an intruder, I can see her as a man, and it's only her voice that I'll recognise," he said.

"Now not every night is that bad; I have what I call bad nights, then I have very bad nights, and then I have horrific nights.

"Even the smell from the nightmare would linger in my nose all the following day".

Mr Quaid said he has one particular nightmare night after night.

"I was after murdering somebody, I don't know who it was - and I'm not a violent person by nature," he said.

"I go into the sleep and I think, 'Oh my God I buried the body, it will be found'.

"The body was in plastic; I'd move the body from one place to the next.

"And the smell of rotting corpse; I have no idea what a rotting corpse smells like, but I had that smell.

"All the following day... not being able to talk with fear of this nightmare that I'm after having: ‘Did I do it? Didn't I do it?’

"I'll often say to [my wife] Helena, when I'm going to bed, 'I wonder what hell am I going to tonight?'

'Get a proper diagnosis'

Mr Quaid said there is life after diagnosis.

"It is a horrible type of dementia, and for anyone that's out there, I really urge you [to] get a diagnosis," he said.

"Get a proper diagnosis, because there is a life there after it.

"There's an upside to my life as well... the nights are bad, but I have found kind of little tricks to deal with it.

"We have a diffuser and it has a nightlight on it, and the nightlight changes colour.

"That in itself, at times, will just bring me back enough to remember who I am and where I am.

"My iPhone, I keep it by the bed all the time, and I'll either put on a comedy or music.

"It gives me a feeling of being safe," he added.

Mr Quaid said he wants people to know they are more than their diagnosis.

"Life doesn't end the day you're diagnosed," he said.

"When you go for that doctor's appointment, or when you go for that diagnosis - let it be Alzheimer’s, let it be Lewy bodies, whatever type of dementia... you are still the same person, only now there is a name to what was driving you mad at night.

"There is a name to what was keeping you awake, and you can deal with it and there is help there.

"There is fantastic help there," he added.

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More information on Dementia with Lewy bodies can be found here

Main image: Kevin Quaid. Picture: Supplied