Groundbreaking legislation to help diagnose those struggling with memory loss in Illinois will impact patients and their families.
In Illinois, it’s a first. Six million Americans are living with dementia and Alzheimer’s, 230,000 across the state. Those numbers are expected to grow significantly. But 50% of patients never receive a diagnosis.
Now there’s a plan, thanks to a lawmaker who lived the experience.
Dr Wei He is a neurologist at Northwestern Medicine.
“Alzheimer’s essentially causes atrophy of the brain,” He said.
That’s the memory processing center in the brain and atrophy is just one of the physical signs of disease.
“I would say a good 20% to 30% of them are seeing me for Alzheimer’s or memory-related disorders,” He said.
By 2050, that number is expected to at least double and there may not be enough neurologists like He to care for the influx of patients.
“I imagine that many if not most of these patients will probably continue to see their primary doctor or family physician to receive the bulk of their dementia care,” he said.
There are cognitive assessments to administer and in some cases, more invasive diagnostic tests. But first, providers and patients have to speak up.
Delia Jervier is the executive director of the Illinois Chapter of the Alzheimer’s Association.
“They wait for their physician to tell them what they need every year,” she said. “And the physician waits for the patient to ask for it. The likelihood of that happening is slim to none.”
Before Juliana Stratton was a lieutenant governor, she was a caregiver.
“I was kind of surprised knowing that this is on the horizon, that there wasn’t more of an effort to make sure the medical profession was aware of the signs so we could diagnose it,” she said.
Stratton’s mother Velma Wiggins lived with her daughter for 13 years.
“My mom, Velma, she was a gentle soul,” Stratton said.
The subtle signs of her slipping memory and confusion were lost in the daily shuffle of a bustling and loving household.
“I had young daughters at the time and they had an opportunity to spend time with their grandmother and really became best friends with them,” Stratton said. “At home if she had asked questions and maybe even repeated questions, we just answered it again. I mean, it wasn’t a big deal. We certainly had no clue that this was potentially the sign of Alzheimer’s.”
But after Wiggins returned from a trip to visit family in Florida, a close relative made the call.
“She called me and said, ‘You know what’s happening right?’ And I said. ‘No I don’t.’ And she said, ‘You should get her tested. She’s showing signs of Alzheimer’s.’” Stratton said. “I would take her to her primary care physician for regular check-ups. The doctors also didn’t see it.”
With a late diagnosis, there wasn’t much time to plan.
“I was her primary caregiver for the last three years of her life. And she passed away in 2016,” Stratton said. ”Of course, I would have loved to have known earlier, but what I also knew is that wasn’t the case for my mom and maybe some others that lived through this, but it didn’t have to stay that way.”
Getting a timely diagnosis can be tricky. According to the Alzheimer’s Association, just 45% of patients actually hear the words, “You have Alzheimer’s disease.”
Jim Butler was one of them.
“It was a real punch in the gut,” he said. “I was hoping there was something else going on.”
Five years ago, at the age of 67, Butler said he knew something was off.
“I was having what I refer to as cognitive hiccups on a more frequent basis. ‘What did I walk into this room to get?’” he said.
He mentioned his episodes of memory loss and confusion to his primary care physician, who ordered more tests and referred the retiree to a neurologist.
“Once I got diagnosed and reached out to some of the great resources that were out there, my world really improved,” he said.
In the five years since, he’s taken part in clinical trials and joined support groups. His wife has a plan in place.
And that’s exactly what Stratton and other Alzheimer’s advocates want for all patients across the state. When she took office, she set her eyes on helping families and patients access care and resources.
“We’ve heard horror stories such as the diagnosis being written on a piece of paper folded and given to the patient saying read that when you get home,” Jervier said. “Those are true stories. That’s why the Alzheimer’s Association is so passionate about the training bill.”
Senate Bill 677, now on Governor Pritzker’s desk awaiting a signature, will make Illinois the very first state to require healthcare professionals who see adults 26 years of age and older to undergo an hour of training prior to licensing. The bottom line? The more providers who can spot the signs of dementia and Alzheimer’s, the more patients who will get a diagnosis.
“The earlier you are diagnosed, the better you can be prepared and you can be part of the conversation,” Jervier said. “You don’t want to be at a place when people are making decisions for you. Physicians, with this bill, will be ready and prepared to answer those questions.”
“I really do believe she is looking down and is so proud of the fact that we are doing something that can help so many families across our state,” Stratton said of her mother. “So I do this in her honor.”
There are resources, including a 24/7 Alzheimer’s Association hotline where a live professional is always available to answer your questions. Call 800-272-3900.