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Family's journey highlights need for research and support on dementia

WILLMAR -- For Bill Taunton, the first five years after his beloved wife, Carol, was diagnosed with Alzheimer's disease were "the best time of my life."

The couple spent long hours together at their retirement home in Arizona. They went for walks in the mountains. They had brunch with friends.

Even under the shadow of dementia, "it was a beautiful time," Taunton said.

"We walked. We talked. Carol and I spent more time together, more time having fun."

The last five years, as the disease progressed and Carol's mind and body wasted away, were the hardest.

When she died on Sept. 26, 2005, at the age of 74, the couple had been married for 52 years. "Forty-seven of them were perfect. The last five were tough," her husband said.

Lately, the Taunton family -- Bill, the couple's seven children, 20 grandchildren and three great-grandchildren -- have been telling their story often. They've been chosen as the honorary chairs of the Willmar area's first Walk to End Alzheimer's on Saturday at Robbins Island.

Organizers hope the event will help boost the profile of Alzheimer's and related dementia disorders. More importantly, they're raising money for research into treatment and prevention, as well as services and support for the 5.4 million Americans and their families living with Alzheimer's.

"Maybe we'll get a cure," said Taunton, a longtime Willmar business owner now retired and living in Woonsocket, S.D., but who still calls Willmar home. "I'm really and sincerely hoping we can."

The local walk is one of nearly 600 across the United States this fall.

The urgency of addressing Alzheimer's disease is mounting like never before. While death rates for other major diseases such as heart disease and cancer are declining, mortality from Alzheimer's is climbing. Among Americans 65 and older, it's now the fifth leading cause of death.

As the population ages, the number of those with Alzheimer's disease is expected to more than double by 2050, unless researchers can find better ways to treat or prevent it.

"There are lots of small studies going on. The scientists are collaborating," said Diane Vosen of the Alzheimer's Association Minnesota-North Dakota office in St. Cloud.

Funding for Alzheimer's research still lags significantly behind that for other diseases, however.

The tipping point might be not far off, Vosen said. "The age of the population is pushing this to the forefront. ... People are paying attention now."

Carol Taunton, a former teacher, was diagnosed with Alzheimer's in 1993 at the relatively young age of 63. Her family credits their local doctor, Philip Iverslie, with recognizing the early signs of dementia and referring her for a definitive workup at the Mayo Clinic.

"It was tough at first. They warn you about a lot of the things that can happen," recalled her husband.

Initially, Carol did well. She joined a clinical trial for Cognex, or tacrine, one of the newer Alzheimer's medications then being tested. When that study ended she enrolled in another, for Aricept.

"In my naïve imagination, I thought we had found the cure for Alzheimer's," Bill said.

One morning in March 2000, Carol unexpectedly became too frightened to use the stairs in their Arizona home. As her condition deteriorated over the next few months, the couple decided to move back to Willmar. By June she was no longer able to walk. Eventually she no longer recognized her family.

For five years, until the end, Bill brought her the fresh flowers and the coconut cream pie from Perkins that he'd brought home every week of their married life together.

"She was the class of the family, not me," he said. "We need a cure."

Early diagnosis is critical in helping families plan for what may be years of caregiving, Vosen said. At her office in St. Cloud, spouses often are the ones who make the first phone call.

"At that point they've probably noticed symptoms for six to 12 months already. When it begins to affect your daily living, that's when you start to pay attention," she said. "Get that (doctor's) appointment made and call. It does help you at least maintain quality of life. You can talk about legal and financial implications."

Information about the disease and local services and resources will be available at the walk on Saturday, Vosen said. "We encourage people to come out and get information. We are in this journey together. I'm hoping our phone rings off the hook after this event."

Taunton said he's looking forward to the event.

"There'll be a lot of friends there and it will be good to see them," he said. "I'm very happy to be a part of it. Anything I can do, I will try to do."

Anne Polta

Anne Polta covers health care, business/economic development and general assignment. Her HealthBeat blog can be found at Follow her on Twitter at @AnnePolta.

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