When Lt. Gov. Juliana Stratton’s mom, Velma Wiggins, began to forget things, Stratton didn’t know the signs of Alzheimer’s, so as her mom’s chief caregiver, had no gauge for the changes soon afoot.
It wasn’t until she sent her mom to visit her aunt in Florida that someone put language to it.
“She lived with my family about 13 years, and we didn’t know she was developing dementia. We didn’t know what the signs were, what to look for. We lost her in 2016 to Alzheimer’s, and it wasn’t until three years prior to her death that she was diagnosed,” said Stratton, whose experience triggered a mission to help others caring for Alzheimer’s patients.
That mission culminated with pioneering legislation to improve the diagnosis of Alzheimer’s, passed in the final days of the legislative session, now on Gov. J.B. Pritzker’s desk.
“In 2013, I put her on a plane to go visit my Aunt Dottie down in Florida,” Stratton recounts.
“Aunt Dottie is a social worker, and she and my mother grew up together. When my mother came back home, my aunt called me and said, ‘You know what’s happening, right?’ I said, ‘Actually, I don’t know what’s going on.’ She said, ‘Your mom’s got all the signs of Alzheimer’s. You need to get her checked out.’ And a specialist confirmed it,” said Stratton.
“What was interesting is that I’d been taking her to her doctor’s appointments on a regular basis, but neither her primary care physician nor me as her daughter knew the signs.”
SB677 would make Illinois the first state to require training on diagnosis, treatment and care of Alzheimer’s for health care professionals as a prerequisite for licensing. A one-hour course would be encompassed in continuing education requirements already existing for physicians, nurses, social workers and others who see patients over the age of 26.
According to the Alzheimer’s Association, only 45 percent of those living with Alzheimer’s get diagnosed, so that more than half of those impacted are denied the opportunity to plan for the future, access vital resources available to families or take part in clinical trials.
Dementia maintains the dubious record of the most expensive disease in America — its costs expected to reach $355 billion this year.
More than 6 million Americans suffer from Alzheimer’s — 230,000 in Illinois.
With an exponentially aging population, the numbers are expected to double by 2050, to nearly 13 million Americans suffering from the disease, and costs reaching $1.1 trillion.
“It was always an incredible honor to care for my mother, but it was also really challenging,” said Stratton, who partnered with the Alzheimer’s Association to advocate for the law.
“Caregiving is stressful. I knew there were a lot of people like me caring for parents, siblings, uncles, aunts and other family members with Alzheimer’s. So when I became lieutenant governor, one of the first things I wanted to do was help people think about Alzheimer’s through the eyes of the caregivers,” said Stratton, who conceptualized the association’s #ThroughOurEyes campaign launched in 2019.
Two-thirds of Americans diagnosed with Alzheimer’s are women, as are two-thirds of their caregivers. African Americans are 50 percent more likely to be diagnosed with the disease than whites; Latinx individuals, 33 percent more likely.
“This is an issue that really affects women, and there’s an equity issue,” said Stratton.
“In marginalized communities, some may not have a primary physician to help with this issue, which is why the legislation includes social workers, home care workers and others people may see regularly,” she said.
The bill grew out of a six-month listening tour around Alzheimer’s conducted statewide.
“It was very emotional to hear people all across the state sharing about confronting the same challenges I had: How do you continue to work and care for your loved one? How do you find the energy to care for your children and your impacted family member? How do you manage the financial strain of caregiving?” said Stratton.
In a study by the Alzheimer’s Association, 93 percent of primary care physicians agree dementia care is a rapidly evolving area of medicine that will require ongoing training. And 50 percent said the profession is unprepared to meet the growing need for that care.
During the pandemic alone, Alzheimer’s deaths increased by 16 percent.
“I’m excited about this bill, and how it will impact lives. I think about my mom as just one person in my own life who lived with the disease,” Stratton said. “And as hard as it was for her, what I do know is that she’s looking down and seeing the work that her daughter is doing to improve the lives of families dealing with Alzheimer’s, and I know she’s smiling.”