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Families fighting Alzheimer's voice concerns at community forum

Wednesday, January 27, 2010 | 10:12 p.m. CST; updated 10:21 p.m. CST, Wednesday, January 27, 2010

COLUMBIA — The Alzheimer's State Plan Task Force partnered with the mid-Missouri chapter of the Alzheimer's Association at a community forum Wednesday to gather input on how to help Missouri families best deal with Alzheimer's disease.

The task force will hold five public forums to assess the needs and concerns of those affected by Alzheimer's disease in Missouri and will report the findings and their recommendations to the governor and General Assembly in November.

"The task force has not come here with any preconceived ideas," said Linda Newkirk, executive director of the association's mid-Missouri chapter. "They are really trying to get a sense of the state of Alzheimer's in Missouri."

Carroll Rodriguez, the public policy director for the Missouri Coalition of Alzheimer's Association, said public input is crucial and will guide the direction of the task force. The idea for a task force started in St. Louis with a small focus group and eventually gained bipartisan support.

"We asked, 'What do you think about an Alzheimer's state plan?'" Rodriguez said. "The answer was absolutely, emphatically, 'Yes.'"

As Alzheimer's becomes more prevalent and the bills to care for patients get more expensive, legislators are focusing more attention on it. Rep. Maria Chappelle-Nadal, D-St. Louis County, and Sen. Bill Stouffer, R-Napton, created the task force. The Alzheimer's Association wants them to be leaders on the issue because of their history in elderly care.

"It's devastating when Alzheimer's patients are diagnosed," Stouffer said. "They need some place to get the latest research and support. A kind of one-stop shop."

The caregivers and patients who attended the event shared their personal experiences and struggles. The main concerns were misdiagnosis, monetary help for home care, better-assisted living facilities and stress-related illnesses in caregivers.

Susan Baker, an early-stage Alzheimer's patient, attended the forum with her daughter and caregiver, Kiersa Toll. Baker and Toll both spoke of the hardships of dealing with the disease day-to-day.

"My life is a happy one, but it's pretty depressing at the same time, knowing that I am going to deteriorate," Baker said. "I keep myself busy, I make things. I just find the joys in my life."

Toll said the hardest part for her is feeling like she is stepping on her mother's toes.

"I don't know how much to take over and when," Toll said. "The dichotomy is trying not to treat your parent like a child."

The task force will continue to hold forums in St. Louis, southwest Missouri, Kansas City, Mo., and Cape Girardeau. For more information visit http://governor.mo.gov/boards/show/ALZHE.


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