Tauranga woman Sharyn Clarke knows how cruel and "hideous" dementia is and that it strikes the middle aged as well those in their 80s and 90s.
It's a disease which also has huge ramifications for the families of sufferers who watch their loved one's memory fade away before their eyes.
To raise awareness, cycling world champion Eddie Dawkins is lending his support to Alzheimers New Zealand by swapping his racing bike for a Harley Davidson to lead a motorcycle rally from Auckland to Taupo to raise funds and awareness of dementia.
Dawkins and his coach Anthony Peden are stopping off in Tauranga this Friday from 12.30pm-1.30pm at Edgewater Fan, 120 The Strand.
Two of his grandparents have been affected by dementia.
Mrs Clarke, 65, said her husband of 45 years, Russell "Russ" Clarke had shown symptoms about two to three years before he was correctly diagnosed with Alzheimer's in April 2010.
"Initially the doctors incorrectly diagnosed Russ as suffering depression or burn out from his stressful job," she said.
"It's indescribably cruel disease, it's beyond hideous. You can't possibly know or understand the hell carers go through watching their people's brains die inch by inch over several years."Mrs Clarke said it all started with her husband forgetting where he put things and not remembering how to do basic things he'd done hundreds of times before.
"That included where he was going, and driving to the supermarket became a huge exercise in frustration and fear as Russ couldn't remember how to exit the car park," she said.
Mr Clarke, 65, had been a catering manager supervisor and had to take early retirement as the disease progressively took hold and Mrs Clarke gave up work to care for him.
Now in a rest home, Mr Clarke needs full-time care.
"Russ' memory and communication skills have been severely compromised. For a man who loved people and talking it is beyond cruel. Family was everything to Russ and he always said having a family was his biggest and best accomplishment in life," Mrs Clark said.
"Mostly he doesn't remember me. Sometimes there are glimmers of recognition but he cannot connect the dots and doesn't know me as his wife. I recently showed him our wedding picture and he couldn't remember the people in it - his parents and me."
The disease came out of the blue with no family history of Alzheimer's and her husband had been an extremely fit and active person, she said.
"Memories are actually a lot of what binds people together by giving us a shared history. It's what builds a relationship and makes us strong. So when our memories start to fade the communication that feeds that intimacy stops and you find your role is no longer as a wife as you know it, but more a facilitator who buys shampoo and toothpaste. A hugely different 'new' normal."
Mrs Clarke said the great value in events like Dawkins' rally is that it renewed discussion about dementia, particularly the need for more funds for research and age-appropriate facilities.
The cyclist is happy to be of help. "Dementia has had a big impact on my family and it was important for me to be able to do something like this to help New Zealanders understand more about dementia," Dawkins said.
To learn more about Dawkins' Ride for Dementia visit www.alzheimers.org.nz. - additional reporting NZME.