Alzheimer's disease advocates take to the hill for future support

Published: Monday, March 11 2013 5:15 p.m. MDT

Literature at a rally during Alzheimer's Advocacy Day at the state Capitol in Salt Lake City on Monday, March 11, 2013.

Jeffrey D. Allred, Deseret News

SALT LAKE CITY — Amy Broderick has watched helplessly over the years as her husband changed into a person she didn't know.

"He's become a little boy again. He carries a Batman lunchbox and a Jazz blanket," the Bluffdale woman told a crowd gathered to support Alzheimer's disease during a rally at the state Capitol on Monday.

Her 39-year-old husband, Noel Broderick, has younger onset dementia that is eating away at his personality and language skills, leaving him to function on a much lower age level. He is one of 1,600 people in Utah who suffer from the disease long before age-related forgetfulness even begins to settle in; and one of more than 250,000 who have been diagnosed with early onset symptoms nationwide.

The disease, Amy Broderick said, has not only taken time away from her husband's life, but has consumed her life, burned her out and left her emotionally and physically tired.

"It's been a hard reality to learn that life together won't turn out the way we had hoped," she said.

Other than a resolution acknowledging the widespread issue, there isn't any pending legislation affecting Alzheimer's patients or their families in Utah this year. Advocates, however, are still pushing for the disease to become a top priority in the state.

"Alzheimer's disease is officially an epidemic," said Kimberly Ware, an administrator at Dignity Home Health and Hospice in American Fork.

Quoting data from the national Alzheimer's Association, Ware said Utah is expected to see a disease growth rate of 127 percent by 2025 — the largest in the United States.

Researchers, even locally, are working to discover the reasons behind the rampant spread of the disease and to discover ways to keep people from dying of Alzheimer's.

Jack Jenks, president of the Utah chapter of the Alzheimer's Association, said he's hoping to gain support for bills next year, including one that would regulate training and establish minimum standards for nurses and other medical personnel that come in contact with individuals who have Alzheimer's disease.

Jenks said Alzheimer's patients often exhibit "peculiar, unique behaviors" that can be difficult to deal with.

"We feel we can get everyone up to speed quickly," he said.

Other ideas, Jenks said, will be studied during the interim session this spring and summer and are tied to Utah's State Plan for Alzheimer's Disease and Related Dementias, which was adopted as a resolution during the 2011 legislative session.

The document sets forth a plan of action to dispel stigmas of the disease, improve access to resources for caregivers, invest in quality care for patients, and expand research, among other objectives.

"If the state plan is not supported, the medical needs of Alzheimer's patients alone will bankrupt the system," Ware said, adding that nearly everyone in the state is or will be affected by Alzheimer's at some point in the future.

It came on unexpectedly for Michael Styles, assistant director of the Utah Division of Aging and Adult Services, who learned seven years ago that his mother, Nellie Styles, had fallen victim of Alzheimer's as well. He said he didn't realize the effect the disease would have on his life and his brother's life in the years to come.

Her behavior, even becoming violent at times, "was a lot different than we knew growing up," said Michael Styles. He said his mother, 88, has forgotten her grandchildren and is unable at times to relate with her sons.

Access to other caregivers and various other resources provided throughout the state, however, have helped change the family's outlook, giving them hope that they can handle whatever their mother throws at them. And, Michael Styles said, he can better share in her life, however she remembers it.

The state plan emphasizes greater access to helpful resources and increased availability of resources.

Chicago native Jill Crowell always thought she was forgetful, but it wasn't until her shortcomings interfered with her successful professional career that she realized something more serious might be to blame.

About a year and two months ago, she was diagnosed with early onset dementia — at the age of 64.

Now 66, Crowell has relocated to Utah in order to be near family, who can help in her times of need and with the progression of her disease, which doctors anticipate to be full-blown in less than four years.

She swears by literature that encourages patients of the disease to live a healthy lifestyle and maintain active relationships with people who keep her engaged and talking. She said her only hope of delaying the disease from taking over her life is following such practices and staying positive about it all.

Jenks said Alzheimer's is the only disease within the nation's top-10 death causing illnesses that can't be slowed down, altered or completely cured.

"There is so much to be done," he said, adding that people aren't afraid of talking about it anymore. "Alzheimer's disease is where cancer was in the 1950s and where AIDS was in the 1980s. We can get on top of this."

Support groups, found years after her husband's diagnosis, have worked miracles for Amy Broderick. Such resources, she said, should be readily available and easy to find in order to help others in need.

"Life continues to be a challenge. He needs help with almost everything. He hardly ever sleeps and he tends to wander off," she said.

But the hardships she's endured to make life work for her little family are worthwhile because she still loves her husband deeply and wants him to be happy.

E-mail: wleonard@deseretnews.com

Twitter: wendyleonards

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