SOMBA K'E/YELLOWKNIFE - Faye Stephenson could once rhyme off recipes by memory, mastering ingredient lists and tossing in exactly the right amounts of this and that to create delicious concoctions.

Not any more.

Faye Stephenson, left, was diagnosed with Alzheimer's disease five years ago. She and her husband Bill visited Yellowknife from Red Deer earlier this month to spread awareness about the disease. - photo courtesy of Donna Durand

The 65-year-old was diagnosed with Alzheimer's Disease five years ago, and since then she's relied on her husband Bill to help her with everyday activities like cooking. The Red Deer, Alta., couple have developed their own intuitive language as the degenerative, dementia-causing disease has progressed.

They've been married for 16 years and have learned since Faye's diagnosis to perfectly finish each other's sentences.

"Bill's very helpful. He gets me out of a lot of trouble," Faye says. "And if we're walking, he'll make sure that he's got my arm because I could just walk into a car so easy and not realize it. Bill's always going to ... take care of us."

"I'll look out for us," he reassures her.

The Stephensons were at the Baker Centre earlier this month to share with local residents their experiences of coping with Alzheimer's. The forum was hosted by the Yellowknife Alzheimer's Society. Roughly 30 people attended the discussion, most of them caregivers for someone with dementia.

"Some people, you know, they just throw it away, they don't want to talk about these things," says Faye, who's still dealing with the early stages of the disease. "It really helps when you get a bunch of people together."

While Faye speaks clearly and articulately to her audience, her incurable memory-ravaging illness seems to disappear. As someone with Alzheimer's, she says some days she feels like the disease will just go away.

"You still think you're going to be just like everybody here," she tells the crowd.

But the audience is seeing Faye on one of her good days, Bill admits.

"In Faye's case, doing something like this is a great mental stimulus," he explains. That's why they accepted the Alzheimer's Society's invitation to talk about the disease. "You think you're helping. You don't know if you are, but the most you can do is share your own candid experience."

At 72 and a half - because "at this age you start counting them in halves" - Bill's been married twice and both times he's found himself in the role of primary caregiver.

"It's hard," he says, choking out the words, wiping away sudden tears. "It's the second time. My first wife died of a brain tumour. That was like a fast train. Now I see the same symptoms happening at a much slower pace."

The president of the Alzheimer's Society Yk chapter says while there's now more awareness about Alzheimer's than in the past, there's still a stigma about the disease that discourages some people from talking openly about it.

"It used to be that people would say it's an old person's disease, but it's really a family disease," says Martha McLellan. "What we've heard from in Yellowknife that's really unique is there's a lot of long distance long-term caregivers."

And often it's the caregivers who are hit the hardest as they watch the dementia slowly steal their loved ones away from them.

Yellowknife resident Wendy Carter was forced nearly two years ago to move her 81-year-old mother into a long-term dementia care facility in Sault Ste. Marie, Ont. That was the point when she and three sisters could no longer manage her mother's Alzheimer's, despite taking shifts to look after her 24 hours a day and hiring a homecare worker nine hours a week. Now Carter and her siblings take turns travelling to Ontario to visit their mother, who no longer recognizes them.

"I still don't come to grips with it. I think about it everyday," says Carter, 54.

"We all carry around a lot of guilt that we had to move her - it's awful. It's absolutely devastating to have to move your mother so far away, but there are no facilities here."

Earlier this month, city council approved the building permit for a new dementia care centre at Aven Manor seniors' home, to which the territorial government committed $15 million in funding in April. Construction is expected to be complete by the end of September 2009.

In Yellowknife, there are about 64 people suffering from dementia, according to non-scientific information from Stanton hospital and other care providers across the city, says Greg Debogorski, executive director of the Yellowknife Association of Concerned Citizens for Seniors. Debogorski estimates that only 50 of those patients are residents of the city, since dementia patients from other Northern communities can end up at Stanton.

"If they get to a certain point, extended care in the hospital is not an option," he says, adding that the new centre will be specially equipped to help reduce stressors for dementia patients.

"It gets tiring on the caregiver but it's pretty stressful for the person going through it as well."

Carter says the centre's construction is good news to many families dealing with dementia, but she regrets it's too late for her mother.

"To be honest, the NWT was absolutely no assistance in finding a home for her," she says. "It would be great if there were more supports for caregivers.

"For the person with Alzheimer's, they reach a point where they don't know what's happening to them," says Carter.

"For the caregivers, it's constant."