This is the first part of a four-part series on Alzheimer’s, a disease that slowly destroys memory and thinking skills, and eventually the ability to carry out simple, daily tasks. The disease, often referred to as “the long goodbye,” is devastating to those who have it, as well as their family members and friends. The series focuses on the disease, how it is diagnosed, progress in research and resources available for caregivers.
Kevin Goeke was an intelligent man and worked as a certified financial planner for more than 30 years.
He loved sports and was an avid golfer.
He also loved meeting people and making people laugh.
“He was such an amazing person,” said Kim Houska, the woman Goeke shared his life with for 23 years.
Goeke, who lived in Arnold, died from Alzheimer’s disease on March 9 at the age of 59.
According to the Alzheimer’s Association, more than 6 million Americans are living with Alzheimer’s or other forms of dementia, with that number expected to double by 2050.
There are no survivors. It’s not just memory loss; the disease destroys brain cells, causing death.
Early-onset Alzheimer’s occurs when a person younger than 65 is diagnosed with the disease, like Goeke. According to the Mayo Clinic, early-onset Alzheimer’s is not too common, representing about 5 percent of people with Alzheimer’s.
Goeke was 45 when he first exhibited signs of memory loss, said Houska, who was a year younger than Goeke.
She first noticed something was amiss when he started repeating questions and seemed to ignore things she asked him to do. However, he was smart and had an explanation for almost everything that could have set off earlier red flags, like his performance at work, which began to suffer.
It’s common for early-onset Alzheimer’s to be misdiagnosed, and that is exactly what happened with Goeke, Houska said.
His first misdiagnosis, in 2009, was attention deficit disorder (ADD), Houska said.
Goeke and Houska accepted the diagnosis, but as time went by, Houska’s family noticed changes in his behavior and urged Huska to discuss it with his doctor.
He continued to struggle at work, and he was getting moody.
The doctor seemed to think he was too young to have Alzheimer’s, but a brain scan was completed. However, the limited scan didn’t show evidence of dementia, Houska said.
Two years after that brain scan, Goeke underwent a four-hour test, and a neurologist said he had severe anxiety, depression and ADD. He was prescribed an antidepressant and ADD medicine and was told to see a psychiatrist, Houska said.
She said Goeke went to a psychiatrist and took his medicine, but after a year, the memory loss and behavior had gotten even more noticeable.
In 2018, Houska’s friend got Goeke connected with the Washington University Memory Diagnostic Center in St. Louis where he was diagnosed with early-onset Alzheimer’s in 2019, Houska said.
The diagnosis brought Goeke and Houska some relief because they finally had the diagnosis they suspected for years.
However, Houska said she believes Goeke should have been diagnosed four years earlier.
Through Washington University, he had doctors that specialized in Alzheimer’s, and he got into a Longitudinal Early-Onset Alzheimer’s Disease Study (LEADS) at Washington University’s Knight Alzheimer’s Disease Research Center to help scientists try to determine causes for early-onset Alzheimer’s and how to diagnose it.
Houska said he’d go to the research center four or five times a year for cognitive testing and other types of testing. Washington University also helped them find support groups, but eventually Goeke’s disease progressed to the point that attending the support group just caused him too much anxiety.
She said a major setback happened about three months after Goeke’s diagnosis when a license office told him he no longer could drive and took his driver’s license away. Goeke became angry about having his license taken away, and that anger stuck with him for two years.
Houska said the license office could have handled the situation better, like involving Goeke’s doctor in the decision to revoke his license.
She said the last three years of Goeke’s life were hell for him and her.
Houska said it was exhausting taking care of Goeke 24 hours a day, chasing him around the house to get his daily needs met, giving him his medicines and taking him to doctor appointments.
She said Goeke’s behavior became so unpredictable that it was hard to be around other people. In addition to his anxiety, he had delusions, and he wandered off a couple of times.
Houska said Goeke experienced sundowning, which the Alzheimer’s Association describes as increased confusion people living with dementia may experience from dusk through night. Symptoms include difficulty sleeping, anxiety, agitation, hallucination, pacing or wandering and disorientation.
She said Goeke sometimes knew her and sometimes he didn’t.
Houska said Goeke got involved in a study that called for sensors to be placed around their home – at every entrance, by the stairs and by the bathroom. She also changed all the light bulbs from soft lighting to a more natural light to reduce the impact on his behavior when the sun went down.
She said she tried to remain positive and make him feel like his feelings were validated even when he wasn’t making sense. She learned ways to “get his mind to reset” when he got stuck on something that caused him anxiety.
By July 2021, when he was being considered for a newly released, controversial Alzheimer’s drug called Aduhelm, Goeke struggled to tell the doctor what year it was and to count backward from 20, Houska said.
She said his doctor, who initially thought he could be a candidate for the new medicine, decided his disease was too advanced.
By October 2022, Goeke could no longer control his bodily functions.
By December 2022, he was losing weight, and an occupational therapist specializing in memory care told Houska it was time to call hospice to get the help they both needed, Houska said.
Goeke died a few months later.
“My fear was having to put him in a home, and I didn’t,” Houska said.
She said she was grateful she owned her own business, Houska’s Ace Hardware in Arnold, so she could take off work to help him or take him with her to work, where he loved to talk to people.
Houska said she and Goeke found purpose in helping others with Alzheimer’s.
Goeke donated his brain to further research, and before his death, they took part in the Jefferson County Walk to End Alzheimer’s, which is held each October at Fox High School in Arnold.
Houska said she recently encountered a couple of women whose spouses had been diagnosed with the disease, and she provided them with tips and resources.
Diagnosis
According to the Alzheimer’s Association, there is no one test that confirms Alzheimer’s disease. A diagnosis is only made after a comprehensive medical evaluation.
A number of over-the-counter dementia screening tests are marketed directly to consumers, but none have been scientifically proven to be accurate, the organization states.
Physicians use diagnostic tools combined with medical history and other information, including neurological exams, cognitive and functional assessments, brain imaging (MRI, CT, PET) and cerebrospinal fluid or blood tests to make an accurate diagnosis.
Those experiencing memory loss or personality changes should keep notes about their symptoms, when symptoms began and how often symptoms occur.
A comprehensive medical evaluation should be done by a doctor who specializes in Alzheimer’s disease. You can contact the Alzheimer’s Association for information and resources by calling 1-800-272-3900.
Getting the right diagnosis and the right care are important, Houska said.
“If you know someone you love is struggling with memory issues and you are told over and over it’s something else, keep insisting for your loved one to be evaluated,” she said.
If Goeke had been diagnosed with the disease at his first brain scan, Houska said Goeke could have been placed on Alzheimer’s medication earlier to reduce cognitive and behavioral symptoms and prolong his life.
“I pray the new drug (Leqembi) that just got approved will help those living with it and (it) gives us hope for the future,” she said.
On July 6, the U.S. Food and Drug Administration approved Leqembi to treat Alzheimer’s disease. According to the FDA, the drug works by reducing amyloid plaques that form in the brain.
Peggy Killian, who works for the Alzheimer’s Association, said clinical trials have shown that the medicine stalls Alzheimer’s progression by three to five months.
“It’s promising because we’re actually seeing the drugs work,” she said. “It’s just what people are gaining is a moderate gain of a few months, but it’s a gain. We’re to the point we’re starting to see treatments that are actually effective.”
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Click through to see all stories in this series related to Alzheimer's.