A new guide for dementia patient carers launched in Brisbane is a useful tool for those looking after afflicted loved ones, a former carer says.

Thirty-six years after Vince O'Rourke asked his wife Margaret to marry him, she turned to him with a question of her own: "Who are you?"

She had been diagnosed with early onset dementia after feeling a strange sensation run from her head throughout her entire body in 1999.

Hospital staff thought the then-59-year-old had suffered a panic attack but a neurologist later confirmed the true diagnosis.

Mr O'Rourke recalls being handed a brain scan spattered with purple - the colour of neural inactivity.

"He said to us, there's no cure," he remembers.

"You may as go home and enjoy whatever life has in front of you."

Margaret eventually died in 2006, aged 66.

After her death, Mr O'Rourke says he found notebooks full of jumbled handwriting penned by a woman who'd affectionately been nicknamed "the walking dictionary".

They were, he says, a token of how his studious wife had tried to conceal her condition for fear of being stamped with a stigma.

Nowadays, Mr O'Rourke works to reduce the stigma for those who care for dementia-ridden loved ones.

He runs a carers respite centre in Nambour, in Queensland's Sunshine Coast region, called Carers Outlook with his second wife Lorrae.

The couple, who met doing work to raise Alzheimer's awareness, took part in the launch of a new guide for carer's in Brisbane on Friday.

The guide is a joint-initiative of the Dementia Collaborative Research Centres and the Queensland University of Technology, and collates stories from more than 300 first-hand carers.
It's geared at helping them decide when and how to use respite care, and includes information about helpful organisations and case studies.

Mr O'Rourke says the input of actual carers, not academics, means the guide will be practically useful to those trying to help their loved ones through the illness.

"They're more likely to listen to someone who has walked the same walk."

He says carers are often beset with guilt when they arrive at the Sunshine Coast Hinterland property.

Either that, or completely exhausted.

A Dalby man who came to stay with his wife, whom he'd spent a decade caring for, was the most tired person Mr O'Rourke had ever seen.

"He said, `Do you mind if I have a 10 minute nap?'" he says.

"He came back two hours later."