Two-Thirds of Alzheimer’s Patients Are Women, and Many Go Undiagnosed. Illinois Legislation Aims to Help Patients and Their Caregivers

Illinois Lieutenant Governor Juliana Stratton advocates for groundbreaking legislation during Alzheimer’s and Brain Awareness Month.

Two-Thirds of Alzheimer’s Patients Are Women, and Many Go Undiagnosed. New Illinois Legislation Aims to Help
Lieutenant Governor Juliana Stratton and her mom Velma Wiggins. Stratton was the caretaker for Wiggins during her battle with Alzheimer’s. (Courtesy the Office of the Lt. Governor)

Before Juliana Stratton became the lieutenant governor of Illinois, she was the primary caregiver for her mother, Velma Wiggins. It took approximately 10 years—until 2013—for doctors to diagnose Wiggins with Alzheimer’s-related dementia: a diagnosis even Stratton herself was not able to recognize. In 2016, Wiggins died.

Wiggins’s situation is not uncommon: It is estimated that more than six million Americans are living with Alzheimer’s—two-thirds of which are women. Furthermore, 45 percent of people living with Alzheimer’s do not receive a diagnosis. 

“It was an incredible honor to care for her to be with her during those really difficult times. And to provide care for her much like she did for me all of my life,” Stratton told Ms. “But at the same time being a caregiver is also really challenging. It is stressful. It has an impact on not just your physical and mental health, but it has an impact on your financial health. And I just knew that there were many other families in Illinois that had the same experience that I did.”

That is why, when Stratton became the lieutenant governor of Illinois, she worked toward better supporting individuals dealing with Alzheimer’s. In 2019, in partnership with the Alzheimer’s Association’s Illinois Chapter, Stratton started the Through Our Eyes campaign. The campaign lasted six months and consisted of 12 listening sessions with caregivers, doctors, researchers and others about the challenges of Alzheimer’s disease.

Two-Thirds of Alzheimer’s Patients Are Women, and Many Go Undiagnosed. New Illinois Legislation Aims to Help
Picture from the Through Our Eyes tour that took the Lt. Gov Stratton around the state on a caregivers listening tour that inspired the bill. Photo (Courtesy the Office of the Lt. Governor)

“I didn’t want to just hear my own story; I wanted to hear what was happening with everyone else,” said Stratton. “And one of the consistent things that I heard repeatedly was the need for early diagnosis … And because we all know that dementia impacts the mind, the sooner someone can know about their own diagnosis, the sooner they can have a voice in their own care, the sooner the family can plan.”

The campaign inspired the lieutenant governor to take concrete next steps to address the lack of early detection of Alzheimer’s disease. On June 24, the Illinois legislature passed and sent the Physicians-Dementia Training Bill—Senate Bill 677—to Governor Pritzker’s desk to await his signature. This bill—sponsored by the Alzheimer’s Association, Senator Ram Villivalam and Representative Kathleen Willis—would make Illinois the first state to require most health care professionals to receive one hour of training every three years to detect the early signs of Alzheimer’s and Alzheimer’s-related dementia.

Starting on January 1, 2023, the training will be required for health care professionals in Illinois who work with an adult population of age 26 or older. After this one hour intensive training, medical professionals will be able to better understand how to assess and diagnose Alzheimer’s disease in patients, how to effectively communicate with patients and how to best manage and create care plans for patients with Alzheimer’s. 

According to Stratton, the legislation is not only personal to her but necessary: When her mother was alive, none of her primary care physicians detected that Wiggins had Alzheimer’s-related dementia. “It was disturbing that [they] also didn’t see the signs—she would go to the doctor on a regular basis,” Stratton said.

If Wiggins’s doctors had diagnosed with Alzheimer’s-related dementia earlier, Stratton explains that Wiggins might have been able to participate in clinical trials, their family could have planned to better help care for her and manage her symptoms, among other scenarios. However, families like Lt. Governor Stratton’s just might not have to. With Senate Bill 677—which will likely pass—medical professionals and politicians alike remain hopeful that more people will receive concrete and early diagnoses for Alzheimer’s and Alzheimer’s-related dementia. 

This training will be especially important for individuals—specifically in marginalized communities—who do not have a primary care physician. With a multitude of medical professionals being trained in diagnosing Alzheimer’s disease, it will be easier for people who come into contact with any medical professional—including nurses, social workers, among others—to be assessed and potentially diagnosed with Alzheimer’s. 

This legislation will also become necessary for years to come. A 2020 report by the Alzheimer’s Association found that nearly nine in 10 primary care physicians, or 87 percent, expect to see an increase in people living with Alzheimer’s-related dementia in the next five years. Fifty percent of those physicians, however, say the medical profession is not prepared to meet this demand. With trainings conducted under Senate Bill 677, more medical professionals will be able to diagnose the early signs of Alzheimer’s disease and Alzheimer’s-related dementia, making a profound impact on the lives of people living in Illinois.

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About

Juliet Schulman-Hall is an editorial fellow for Ms. and a rising senior at Smith College. She is majoring in English language & literature, minoring in sociology, and concentrating in poetry. Her beats include caregiving, mental health and disability advocacy, and criminal justice reform and abolition. Follow her @jschulmanhall