Area family will represent the face of Alzheimer’s at annual fundraising walk
WILLMAR — Dr. Alvin O. Setzepfandt was already visibly declining from Alzheimer’s disease when his family found the notes he had written earlier for himself.
The notes, tucked away in his personal files, indicated he had privately done his own research months earlier on the disease that would eventually lead to his death, recalled his son, Paul Setzepfandt of Bird Island.
“He knew,” he said.
On Oct. 5, the Setzepfandt family will represent the face of Alzheimer’s disease as honorary chairs of the third annual Willmar-area Walk to End Alzheimer’s.
The event is one of hundreds being held across the U.S. this fall to raise awareness of the disease and funds for research.
The goal this year is to raise $71,000 locally, said Carol Thelen, director of the St. Cloud regional center of the Alzheimer’s Association.
“We feel we’ve got a high chance to meet those numbers,” she said. Nearly 250 people have signed up to participate in the walk, which starts at 9 a.m. at Robbins Island Park.
As people live longer and the population ages, Alzheimer’s has increasingly come to the fore as an issue to be reckoned with. A new study issued this month by Alzheimer’s Disease International predicts that by 2050, the number of people worldwide with Alzheimer’s and related forms of dementia will triple, placing a severe strain on family and community resources.
For the Setzepfandts, the early signs of Alzheimer’s were mostly subtle. Alvin’s wife, Carol, kept a daily diary and as far back as 1998, she “noted little strange things and never gave it a thought,” Paul said.
But his father, a longtime Bird Island veterinarian who also had a distinguished political career that included terms in the Minnesota House and Senate, clearly suspected, Paul Setzepfandt said. “He was a very smart man.”
By 2003 his father’s decline was becoming apparent. He spent the last three years of his life in a skilled nursing facility before his death this past January at age 88.
Paul Setzepfandt called it “the long goodbye.”
“That last six months was long. That last week was really long,” he said.
Thelen sees and hears about the impact of Alzheimer’s disease on a daily basis. One of the messages she emphasizes to families, as well as the public, is that Alzheimer’s and related dementias are brain diseases and should not be confused with normal aging.
It’s normal for someone to get lost in an unfamiliar setting, Thelen said. But getting lost somewhere familiar is “a real big red flag,” she said. “That’s much different than getting lost on unfamiliar roads. … There’s a difference between normal aging and someone who has a brain disease.”
The course of the disease also unfolds in ways that are difficult to predict, she said. “It’s hard to tell families really what to expect.”
More funding for research into the causes of Alzheimer’s disease and effective treatment and prevention is critical, said Thelen. Although there are four licensed drug treatments to manage Alzheimer symptoms, none slow the progression of the disease and there is as yet no cure for Alzheimer’s disease, she said.
The aim of the Alzheimer’s Association is to increase national research funding to $1 billion, she said. “We’ve got to find more funding at the federal level.”
Public education is critically important too, and is one of the reasons why the Setzepfandts have come forward to tell their story and lead the Alzheimer’s walk in Willmar on Oct. 5, Paul Setzepfandt said.
“Be aware of what’s happening to the people who have it and the families that are affected by it,” he said.
Setzepfandt, who is on the Renville County Board of Commissioners, said Alzheimer’s disease and related dementia is a community issue as well as a personal issue. “It’s affected us, yes,” he said. “Does it stop there? I would say no.”
For more about the Setzepfandt family’s story, watch the Tribune video at www.wctrib.com.