PHOENIX (3TV) – Imagine being in your 30s or 40s, and getting diagnosed with dementia. Losing your mind, in the prime of your life. There is no cure, but there is hope.
The earlier you detect it, the better your odds of responding to treatment to delay the symptoms. We’re all familiar with the more progressed benchmarks. Friends become strangers. The familiar is foreign. It’s a scary reality for people who are maybe still working, still raising their kids, trying to keep it together. Five million Americans have Alzheimer’s.
That’s a type of dementia.
And while those younger cases of early onset, early stage dementia are rare, experts say they’re also extremely under-diagnosed because no one wants to face that possibility, where age is just a number.
Patti Crowley is 48.
“I have friends and we joke about our memory. We wanna laugh it off. You just don’t take it seriously in your 40s,” Crowley said.
“I think we all have those ‘where are my keys’ moments. But for me, it’s been just, not being able to get my thoughts straight for the day, even just what I’m doing from moment to moment, it’s a struggle,” Crowley said.
For years, she chalked it up to stress or fatigue.
Then it became more common and frustrating.
“My anxiety is what’s really debilitating. Just having to write everything down, and even then, still forgetting,” Crowley said.
She used to work with Alzheimer’s patients as a nurses aide in college.
“I saw what it was like and I don’t wanna be that way. I don’t wanna not recognize my family,” Crowley said.
That is why her diagnosis of early onset stage 1 dementia is so tough to process.
“It scares the hell out of me,” Crowley said. “I’m too young to not have my memory.”
She sought out help, from Scottsdale Clinical Neuropsychologist, Dr. John DenBoer,who specializes in early dementia diagnosis.
“It can seem extremely disheartening when you don’t couple that with some amount of intervention or hope,” Dr. DenBoer said.
“The overall myth is that dementia is a normal part of aging,” DenBoer, said. “Dementia isn’t inevitable, it’s a disease.”
“And it’s very preventable in the very early stages,” DenBoer said.
And that’s the problem.
Most patients hide their symptoms for years, seeking help in their mid-60s after family and friends start to notice how bad it really is.
“There’s a great amount of pride (when it comes to) losing one’s ‘smartness’ or intelligence,” DenBoer said.
While there’s no cure, there are treatments, he said, that have been proven to slow the progression.
Dr. DenBoer said crosswords and brain teasers aren’t enough to keep your mind sharp.
“If you know how to do something already, it doesn’t count as any sort of dementia prevention. You have to do things that are incredibly new and novel. Things you have never encountered before. So, as an example, if you are a mathematician, you have to research botany. If you are a botanist, it would help to learn a foreign language,” DenBoer said.
His “Smart Aging” program is tailored to each patient, triggering glutamine in the brain that prevents shrinkage and atrophy, associated with dementia.
He says trials of about 1,000 patients in nursing home and assisted living facilities across the Valley show it’s working.
“Their cognition, their thought process, their memory, their attention, and concentrations actually improving,” DenBoer said.
Ali Alyaqoobi, is an example of that.
The 36-year-old internal medicine doctor used to travel to hospitals across Arizona until he was sidelined by a stroke three months ago.
Now, like Crowley, he’s fighting an unseen battle to get his mind to make sense of the things he knows he knows.
“It was very frustrating for me. Everybody looking at me from the outside telling me, ‘Hey, you look fine, nothings wrong with you.’ But from the inside, obviously, you’re having so much to deal with,” Alyaqoobi said.
Alyaqoobi has mild cognitive impairment, a precursor to dementia.
“Until this happens to you, you don’t realize, I used to do this without thinking about it,” Alyaqoobi said.
He can’t work.
He can’t even drive.
“I wanna know I’m 100 percent back to normal first,” Alyaqoobi said.
His short-term memory recall has shown significant improvement using Dr. DenBoer’s Smart Aging therapy.
“We always have fear, but don’t give up. Don’t ever give up,” Alyaqoobi said.
Crowley is scared, but she is ready to fight for herself, for her kids, and for more memorable tomorrows.
“I’ve seen other doctors and no one ever said to me, ‘We have a plan, we’re gonna make this okay.’ I never heard that before, so this is encouraging,” she said of the promise and potential she’s hoping will be possible with Dr. DenBoer.
“There is hope. There is action,” DenBoer said.
“If there’s something I can do to prevent it, or to keep it from progressing, I’m gonna do it,” Crowley said.
The Smart Aging program is covered by Medicare and insurance and is available at seven clinics across the Valley.
The biggest hurdle to overcome is the stigma of the diagnosis but the earlier you detect it, the better your odds of responding to treatment.
When to see a specialist
What’s the difference between simple forgetfulness and something more serious?
“Many people get told by the average physician, there’s nothing that they can do,” DenBoer said.
He said the symptoms can start up to a decade, or more, before diagnosis.
It’s a disease, and even heart disease doesn’t have the same stigma.
Maybe it’s because your brain really defines who you are, your personality, your perception, your place in your community.
Ironically, the fear of losing touch with that might mean a faster pace of decline.
“I’d want to know! I would want to know,” Crowley insisted.
She was tired of feeling anxious and helpless from the increasing frustrations of forgetfulness.
Dr. DenBoer was the first doctor to ever put her through a cognitive test.
“Nine times out of 10, unfortunately, people have been in a state where it’s been progressing for a while, and a neuropsychologist like myself, is able to pick that up with a high degree of specificity,” DenBoer said.
He said for every dementia diagnosis, another three people are undiagnosed.
“We are extremely under diagnosed,” DenBoer said.
There’s no blood test.
And other methods of confirming more progressed cases of dementia and Alzheimer’s, like MRIs, brain scans or spinal taps, aren’t sensitive enough to show the earliest markers.
“Most times we don’t see this in ourselves. Our partners or loved ones see this in us,” DenBoer said.
The biggest warning sign for early onset dementia?
Frequency and frustration.
Do you find yourself disoriented even when you’re not tired or stressed?
Are your memory lapses so frequent, they’re frustrating?
“If you feel like your mood is being significantly impacted by these problems, then you should see a specialist! And not just a primary care physician. You should see a specialist in this particular area to get an assessment to see if your symptoms are within the normal range of aging,” DenBoer said.
He uses a comprehensive three-hour neuropsychological exam that compares your responses to thousands of other people with your same age, sex, educations and socio-economic background to set a benchmark for your cognitive range.
He couples that with your family and occupational assessments to set a course for therapy, hoping to get your symptoms to plateau and slow any further progression.
Obviously, age and family history up the ante if you have any of those warning signs.
But he said the biggest thing is to have the courage, like Crowley, to ask questions and seek out a diagnosis.
If you don’t have it, fine.
If you do, at least you can start now to stop or slow the pace and progression, instead of waiting for your loved ones to ask those tough questions.
If you’d like to learn more or are interested in being a part of Dr. DenBoer’s Smart Aging Pilot Program, click here.
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