Vienna woman advocates for Alzheimer’s research

By Colin Willard, Staff Writer
Posted 3/15/23

VIENNA — Maries County will have a representative at the United States Capitol later this month when the Alzheimer’s Association makes its annual trip to meet with legislators.

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Vienna woman advocates for Alzheimer’s research

Posted

VIENNA — Maries County will have a representative at the United States Capitol later this month when the Alzheimer’s Association makes its annual trip to meet with legislators.

The Alzheimer’s Association is a nationwide advocacy group. According to data from the organization, about 6.5 million Americans live with Alzheimer’s. Each U.S. congressional district has a representative that the association designates to meet with lawmakers.

Sara Wyss of Vienna is the Alzheimer’s Association representative for Missouri’s third congressional district, which includes Maries County. Wyss became involved with the Alzheimer’s Association because of her grandmother Hellen Cook, who received an Alzheimer’s diagnosis in 2012. Wyss, who is a nurse like her grandmother, became her grandmother’s caregiver.

“She always ran seven miles a day,” Wyss said. “It took three people to take care of her because she would forget that she did her seven-mile run and she wanted to do it again. Sometimes she wanted to do it three times a day! So I felt like I was in the best shape when I was her caregiver because I was running seven miles a day with her.”

Wyss said that her grandmother’s physical ability broke the stereotype of how most people perceive those living with Alzheimer’s.

“I think a lot of people think Alzheimer’s people are just in wheelchairs or bedbound, but she was still very physically active,” Wyss said. “She just couldn’t really verbalize or rationalize how to use the telephone.”

In 2013, Cook went missing from the family’s lakehouse in Benton County.

“I think she probably got confused about where she was because she probably thought she was back home in Buckner,” Wyss said.

After 29 days of searching, Cook’s remains were found in Benton County. Wyss, who worked to spread the word about her grandmother’s disappearance, did not want the story to end there.

“The Alzheimer’s Association was very big in helping with her case and giving us education about when someone with Alzheimer’s goes missing,” Wyss said. “When she died, they said ‘hey, if you want to use your tragedy for good, that would be great.’”

Since then, Wyss has volunteered with the Alzheimer’s Association as an advocate. Later this week, she plans to visit Washington D.C. for the ninth year in a row to speak with Missouri legislators. This will be her first year meeting with Rep. Blaine Luetkemeyer because she recently moved into his district from the eighth district. She also plans to meet with first-term Sen. Eric Schmitt and Sen. Josh Hawley.

During the meetings with legislators, the representatives from the Alzheimer’s Association will request that Congress fully fund the National Institutes of Health’s budget to research Alzheimers.

“Alzheimer’s research is very underfunded, especially since it’s such an expensive disease for the government’s Medicaid and Medicare dollars,” Wyss said. “Our big argument is if we spend some money on research now, we’ll save the government lots of money with the baby boomers coming up.”

According to data from the Alzheimer’s Association, federal funding for Alzheimer’s research has increased by more than seven times over the last decade.

The organization has also encouraged change at the state level. Missouri adopted the Silver Alert advisory program, which, like the Amber Alert advisories, informs nearby people of a person age 60 or older with a cognitive impairment who may be missing or endangered.

Police training also saw reform to include information to aid investigations of missing people who have Alzheimer’s or dementia. Wyss said that during the search for her grandmother, there was some misunderstanding with law enforcement about her condition, which made Cook unable to call home.

Last month, Wyss went to Jefferson City as part of a coordinated effort by the Alzheimer’s Association. She attended eight meetings with various officials. Wyss said the major topics of the day were implementing a state Alzheimer’s plan to guide caregivers to resources about the disease, establishing a dementia services coordinator position with the Missouri Department of Health and Senior Services and increasing Alzheimer’s respite funding, which has remained stagnant for a decade.

Wyss said that the advocacy trips and volunteer work can be a lot to handle. When she talks about her grandmother, she wears a button that displays an old photo of her grandmother.

“It helps to look at her and remember why I’m doing this,” she said. “It’s all volunteer work. It’s nice to know it’s for someone that made a difference in my life, and I’m making a lot of difference in other people’s lives just by sharing her story.”