Ken Kirby, who died Saturday, pushed for Alzheimer's to be recognized cause of death

CDC changed physicians handbook after letter from Kirby, likely leading to more funding for the disease

Ken Kirby holds a portrait of him and his wife, Bernice, as he sits with Kathy Good, director of the Family Caregivers C
Ken Kirby holds a portrait of him and his wife, Bernice, as he sits with Kathy Good, director of the Family Caregivers Center of Mercy in Cedar Rapids, in this 2016 photo. Kirby, who petitioned the federal government to have Alzheimer’s disease listed as the cause of death on death certificates, died Saturday. Kirby received help from Good in his petition quest. (Jim Slosiarek/The Gazette)

A Cedar Rapids man who wanted more doctors to recognize Alzheimer’s disease as a cause of death, generating more research money for the devastating disease that killed his wife, died Saturday at age 96.

Ken Kirby was married to Bernice Kirby for 68 years when she died in 2016 after 10 years with Alzheimer’s. He worked with Mercy Medical Center to get Bernice’s death certificate changed from reporting the cause of death as a heart attack to the cause being Alzheimer’s, a disease that slowly robs body functions.

Kirby didn’t stop there.

The biochemist who was vice president of research at Penford Corp. (now Ingredion) before retiring in 1991, wrote in 2016 to the director of the federal Centers for Disease Control and Prevention to suggest the CDC update instructions for doctors documenting cause of death, The Gazette reported.

Although the handbook says the principal disease must be recognized as the sickness that initiated the events leading to the death, Kirby said it should include an example of how Alzheimer’s may lead to pneumonia, for example, and that the underlying cause of death is Alzheimer’s.

“Most physicians do not follow this section, and when aspiration pneumonia precedes the actual death it becomes the immediate cause of death,” Kirby wrote in that 2016 letter. “This robs the Alzheimer victim from reporting an Alzheimer death for CDC reporting to Congress, and research dollars are lost.”

The CDC responded to Kirby in 2016, saying the organization planned to add the Alzheimer’s example in a new electronic version of the physician handbook and in online provider training.

“This was a legacy for my wife,” Kirby said to The Gazette in 2016. “It’s the best thing I can do for her — I can’t do any more for her now.”


Dr. Tim Quinn, Mercy’s chief of clinical operations, got to know Kirby through Kirby’s advocacy for changing physician instructions about listing Alzheimer’s as a cause of death.

“Ken was good about providing a personal story and understanding the contextual relationship of how it would lead to funding,” Quinn said.

The physician handbook changes, as well as more understanding of Alzheimer’s and dementia, likely have increased reporting of the disease as a top cause of death, Quinn said.

“My sense is that physicians are more aware of how to document it so it stays as a leading diagnosis,” he said.

The change was the “major accomplishment” in Kirby’s life, according to his obituary, but the life of the Minnesota native who moved to Cedar Rapids in the late 1950s also involved music, service to his community and family.

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