One night a few years ago, Debby McCombs woke up to a phone call from a neighbor.
“She (the neighbor) said, ‘Herman just walked by,’” the Kokomo resident recalled, referring to McCombs’ husband.
McCombs then looked over in bed, but her husband wasn’t there.
After a short search, Herman was found in a different part of the neighborhood, bloody and battered from what Debby only can assume was either a fall or him being struck by a vehicle.
“He couldn’t tell us what happened,” she said. And that’s the raw side of Alzheimer’s disease.
Herman, a long-time local auctioneer, was diagnosed with the disease a little over a decade ago, and he passed in 2019.
“I think he knew something was going on, but not quite what it was,” Debby said. “… You mourn them twice. You lose them twice. The first time Herman didn’t know who I was, and I knew to expect it, but I still didn’t think it’d happen. It just absolutely broke my heart.
“You see that person reduced down to a toddler, and they just change. And you have to join them in their world. But the amazing thing, and this was toward the end of his life when he didn’t even know who I was, he could still lay there in bed and conduct an auction without skipping a beat.”
And through it all, Debby stood firm by her husband, a caregiver until the end.
But she wasn’t alone.
Michelle Sutton, Debby’s daughter and Herman’s stepdaughter, was right there in the trenches with her, from taking a crash course in Alzheimer’s disease in the beginning to being there in Herman’s final hours.
Of course Sutton didn’t know it at the time, but that experience would prepare her for when her own father, Bob, was diagnosed with Alzheimer’s disease a few years later.
And just like Michelle helped Debby with Herman, Debby was right there for Bob and Michelle.
“People don’t understand that,” Debby said. “They asked me, ‘Why would you do that? Why would you help take care of your ex-husband?’ But I just knew it was what I was supposed to do.” L i ke wit h Herman, Alzheimer’s disease took Bob’s memory quickly, and he passed away in 2023.
Both women admitted the process was heart wrenching to watch.
“That was the hardest thing I’ve ever done in my life because you’re watching them fail to thrive,” Sutton said. “They’re scared. They’re afraid. They don’t know what’s going on, and someone has to be with them all the time. And you, as a caregiver, are mourning them the whole time because you know you’re losing them.”
The McCombs and the Suttons are not alone either.
According to the Alzheimer’s Association, there are around 7 million Americans living with the disease, and that number is expected to rise to roughly 13 million by 2050 due to factors like the aging population.
And in the Hoosier state, per recent data released by the association, nearly 11% of adults over age 65 — around 120,000 people — are living with the disease.
Alzheimer’s disease is also the seventh leading cause of death among adults in the United States, per the Centers for Disease Control and Prevention, as well as the sixth leading cause of death for adults ages 65 years or older.
So with the number of diagnoses only expected to rise, and no current cure, doctors and researchers are in a race against time.
But it’s a race experts said they are determined to win.
BEHIND THE DIAGNOSIS
To learn about how experts are determined to win the race against Alzheimer’s disease, Dr. Sophia Wang said it’s important to know how exactly the disease occurs.
Wang is a professor of clinical psychiatry at IU School of Medicine, as well as an outreach, recruitment and engagement core leader at the Indiana Alzheimer’s Disease Research Center.
According to Wang, Alzheimer’s disease is dementia, but dementia is not always Alzheimer’s disease, noting dementia has three key features.
The first is cognitive decline, Wang said, referring to a person’s memory becoming worse over time, compared to their baseline.
There is also functional decline, when a person cannot perform the tasks they used to be able to do, such as driving, paying bills, cooking and cleaning.
Then there is functional decline due to the cognitive decline.
“In other words, somebody cannot drive because their memory has gotten worse over time,” Wang said. “… So there are many different types of dementia.”
Alzheimer’s is the most common one, Wang noted, adding a “classic feature” of Alzheimer’s disease is the deposit of a protein called beta amyloid (also referred to as amyloid-beta) in the brain.
“These proteins clump together in the brain tissue to then form beta amyloid plaques,” she said.
And while there are cases of early onset Alzheimer’s disease, Wang said most dementias are typically seen in adults over 65.
Alzheimer’s disease is not strictly genetic, she said, noting there is a mixture of environmental factors that come into play.
“’My parents had it, I’m going to have it,’” Wang said, citing what she often hears. “However, risk is more complex. Your parents had it, and you may be at higher risk, but there are activities that you can do, such as exercise and consuming a healthy diet, to help reduce that risk.”
But how can you tell whether someone has normal memory issues due to aging or are in the early stages of Alzheimer’s disease?
It’s not always easy to tell, Wang said, because not every forgetful moment in a person’s life — even if they have mild cognitive impairment — means they will develop the disease.
But there are signs loved ones can look for, she explained.
“People may have difficulty being able to multitask or organize complex tasks,” Wang said. “For example, someone could have been able to organize major family events or cook a 10-course Thanksgiving dinner by themselves, but now they are not able to organize them. Another example is when people have changes in their behaviors or mood. … They could also have new symptoms of depression, anxiety, or become suspicious without reason of people they used to trust.
“They could also start to hallucinate, in which they hear voices of people that aren’t there or see people or animals that aren’t there. When you see any of these changes, those are reasons to have a conversation with a healthcare professional about the next step for a dementia workup.”
And the earlier the better for that conversation, Wang said.
Because while there is no cure for Alzheimer’s disease, experts say the rigorous research conducted in recent years has at least changed the narrative for those directly affected.
BENEFITS OF EARLY DETECTION
Dr. Diana Summanwar specializes in family medicine at IU Health in Indianapolis, a position she’s been at for the past several years.
She’s also heavily involved with IU Health’s new pilot program, called the Brain Health Navigator Program.
The program is essentially a pathway that makes it easier to complete all the assessments required when either a patient or a provider has a concern about memory.
“So, say a patient comes to the doctor and says, ‘I have this concern,’ or a patient comes for a preventative visit, and they do a routine screening test,” she said. “Say that comes back abnormal. That’s only a screening. We need to really dig in to do some more testing to verify whether this patient truly has a memory issue or not, but that process is time consuming.”
And when time is often not on your side with Alzheimer’s disease, Summanwar said every minute is critical.
“So we developed this system pathway,” she said. “You can call in to IU Health, and if I am a provider and I have a patient that has concerns, I can just simply send a referral to a specialized nurse. This nurse is what we call the Brain Health Navigator.”
That Brain Health Navigator would then run tests and propose lab work that could often take weeks or months to conduct if an individual had to be sent to a neurologist, Summanwar noted. “They review all of that and send out a note with the assessment to the provider,” Summanwar said. “So when the patient comes back and sees the provider, they have already moved forward in that pathway. And that early intervention is key because the new treatments that are available are most effective for the mild cognitive impairment.
“When we have severe dementia, it’s already too late to start treatment,” she added. “But by diagnosing early, we can try to slow down the progression rate. If somebody has the genetic disposition to develop Alzheimer’s, we cannot change that. But what we can change is all the other factors that speed the development of symptoms.”
And while there are medications on the market that can help with Alzheimer’s disease, as well as breakthroughs in research, it’s that early detection that really can make the biggest difference, both Wang and Summanwar said.
It’s important to know you’re not alone either, they noted.
“No one should have to navigate this journey in silence or in confusion,” Summanwar said. “This is a public health challenge that deserves early attention, sympathy and coordination across every level of care. Help is out there. And the earlier we talk about brain health, the better our chances are of preserving that quality of life for everyone involved.”
Sutton, whose father passed away in 2023, agreed.
“We can protect people that have dementia and be their advocate until that day comes (for a cure),” she said. “I made a commitment to that, and I know my dad is proud of me. And we’re going to continue to advocate. We’re going to use our voice to be their voice.”
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