James Giarusso watched his 94-year-old father slide into the early stages of Alzheimer’s disease. Now he wants every tool available to him to ward off the neurodegenerative disorder that robs the mind of memory and takes family members hostage.
So the part-time Boca Raton resident, after following his father’s care under Dr. James Galvin at Florida Atlantic University’s Comprehensive Center for Brain Health, had a question for the renowned neurologist.
“I said, ‘Here I am in my 60s. I don’t want to wait until I’m in my 80s and I have significant deterioration. Aren’t there some studies I can get involved in that would allow you to monitor me so we can detect much earlier in the process when things are starting to decline?” Giarusso asked.
A third of dementia is preventable, Dr. Galvin told The Palm Beach Post in an interview. The center he runs tailors treatment holistically to the entire individual rather than typical approaches, which he calls “one size fits all.”
“If you think about the person as a whole and treat the person as a whole, you will have a much better chance of changing their outcome,” Galvin said.
FAU’s Charles E. Schmidt College of Medicine received a $1 million grant from The Harry T. Mangurian Jr. Foundation to allow the center to launch the Dementia Prevention Initiative that will utilize the new approach and incorporate new advances, such as in genetics, to combat these debilitating diseases.
An estimated 16 million Americans by the year 2050 will be affected by Alzheimer’s, Lewy Body, Parkinson’s or some form of dementia, FAU said.
“After age and family history, the strongest risk factors for dementia are the same risks for cardiovascular disease — so high blood pressure, diabetes, high cholesterol,” Galvin said. “What’s good for your heart is good for a brain.”
Nine risk factors
That means much of what Galvin does is based on hours of testing cognitive, physical and internal functions to identify nine risk factors and address them through behavioral and diet modification, as well as medicine.
Besides his medical degree, Galvin has master’s degrees in nutrition and public health. “We try very hard to take these broader approaches and figure out how we can make little changes in people’s lifestyles that can have much more dramatic and meaningful effects,” he said.
FAU says the clinic is one of the very few in the world that takes this holistic approach to dementia.
It has been open since October and has seen more than 100 patients. The new initiative will take 70 participants through the clinic’s labyrinth on FAU’s Boca Raton campus, where a five-hour assessment of just about every human cognitive — as well as physical — function is measured.
Most health insurance doesn’t pay for such preventative services, but Galvin said the clinic at this point is just trying to break even and the Mangurian Foundation grant will help offset costs.
The good news from Galvin and FAU is that Americans have more control than they ever thought in avoiding significant cognitive decline. The bad news is there may be no magic pill.
Like with everything else from heart disease to obesity to video screen time in Super Size America, Americans are losing the battle. Estimates are that by age 85, an individual has a 42 percent risk of developing Alzheimer’s or related disorders.
Behavioral and diet modification isn’t easy. Ask anybody trying to lose 10 pounds. Want to improve your chances of avoiding Alzheimer’s right now? Eliminate artificial sweeteners that recently have been linked in a study to neurodegenerative disorders. Yes, that means no diet soda.
“It is time to abandon generalized approaches to how we address Alzheimer’s disease and other forms of dementia and to usher in a paradigm shift,” said Dr. Phillip Boiselle, dean of FAU’s College of Medicine.
He said the Mangurian grant will help establish a new way to address disorders that have a significant impact on the nation’s health care. If Americans could just delay, not even prevent, dementia by five years, family savings would approach $87 billion and social savings would approach $367 million, according to FAU.
“In South Florida alone, we would reduce the number of cases by 50 percent, which would spare 250,000 people from suffering from this devastating disease that impacts the individual, the family, the caregiver and the community,” said Stephen Mehallis, Mangurian Foundation president.
The mother of Judy Waldman, 65, of Hollywood, went through the center’s regimen, prompting Waldman to find out if she was at risk. “When you have a parent diagnosed with Alzheimer’s, it makes you a little paranoid about the little things you forget,” she said.
What impresses Waldman is that Dr. Galvin has assembled a team: a physical therapist, a psychologist and numerous other specialists. And while she did great on the memory tests, her blood work showed a risk for deep vein thrombosis and now she wears compression stockings.
As for her mother, she has seen the 87-year-old more alert and present. “Who has ever heard of improvement in Alzheimer’s but we are seeing improvement,” Waldman said.
A problem with the one-size-fits-all approach can be seen in drug clinical studies, Galvin said. Test subjects are not cloned mice. They have different body weights; some smoke, some might have diabetes, others have high blood pressure — all factors for how any medicine will be effective.
These are things that Galvin and his team are trying to catch by treating patients individually, not as a homogeneous group, to reduce risk factors. “Then our medicine is going to be more effective,” he said.
This new approach has been borrowed from the cancer world, where every tumor is unique and chemotherapy and treatment can be tailored, he said.
So how does the clinic work?
The first step is to assess cognitive abilities. Forgetting people’s names is a common concern among people as they age, but Galvin said that is not really a warning sign of dementia. Forgetting people’s faces, that is more serious.
The five-hour assessment includes blood work that can identify a protein that is an indicator for dementia. It includes hearing tests; an EEG, which shows brain wave patterns; a battery of exercises to access strength and balance; and a head-to-toe physical examination.
A lot of time also is spent examining the eyes to measure blood flow to the brain. “The eyes are the window to the brain,” Galvin likes to say.
One of the more important aspects of the assessment is that the patient must bring a person who knows them well — a wife, a sibling, an adult child — who works as an informant, is interviewed alone and is free to convey concerns about a patient’s memory, personality changes, sleep pattern and other changes.
This third-party critique is critical, Galvin said.
“People tend not to be aware of their memory problems,” the neurologist said. “They say, ‘I didn’t lose my keys, you keep moving them. I didn’t bounce the check, the bank made a mistake. I didn’t lose my job, they are out to get me.’ They are recognizing there is a problem, but they don’t recognize the problem as cognitive.”
There is, of course, a collection of pencil and paper and verbal memory tests that are designed to capture different domains of ability that could indicate, if dementia is present, what type it might be.
Such verbal tests include repeating number spans forward and backward, freely naming animals, tongue-twisters — such as “around the rugged rock the ragged rascal ran” — and listing words that start with the letter F — though expletives don’t count.
“The phrase ‘no, ifs ands or buts,’ has no nouns or verbs. As a sentence, if you have a language problem you will tend to have difficulty with those words,” Galvin said.
Giarusso, 66, who also has a home in Cape Cod, Mass., said he found the memory tests challenging but fun.
“The results were very interesting and really correlated a bunch of things that I understood about myself but gave me some quantifiable information to really zero in and say, ‘This is what is really going on,’” Giarusso said. “Now we got a baseline to measure.”
He said he is making changes in diet and exercise. Controlling his diabetes makes it hard to eliminate artificial sweeteners.
When it came to his father, these assessments were crucial in making life changes and getting his father into an assisted-care facility. The 94-year-old was hellbent on getting a new car, but after he saw data from the center’s driving test, his father agreed to hand over the keys. Later, he volunteered to move into assisted-living.
“He was able to make the decisions,” Giarusso said. “You get this report that you read to him and he says, ‘Oh gee, maybe I should do something.’”
Other patients have come into the center with fear of memory loss and discovered other ailments were to blame.
David Decoteau, 67, a professional photographer from Fort Lauderdale, noticed he was struggling with simple math. “It wasn’t making sense to me like it did before,” he said. “I would also forget names and simple conversation. Then I started experiencing trouble with spelling words and basic living skills. I was losing my ability to cope with things and new projects.”
What he learned at the center was that he was indeed suffering from mild cognitive impairment but the reason was a surprise.
“They had done an MRI that showed some loss of white matter in the brain. The cause of that was a head injury coupled with some sort of depression that created a situation they called mild cognitive impairment,” he said.
Decoteau is now treating his depression for the first time through counseling, nutrition and lifestyle changes — being especially careful not to isolate.
“I think one thing that has helped a lot is the vitamin supplements,” he said. “I have to admit I’m much better now than I was six or eight months ago.”
Galvin said Decoteau is a perfect example of how a one-size-fits-all approach would not have worked. He says the center’s exhaustive approach turns traditional treatment of dementia on its head and may revolutionize the way we tackle a disease that robs us of really our only true possession: ourselves.
“You don’t see the word memory anywhere here,” he said. “This is a comprehensive center for brain health. We spend way too much time talking about disease, disability and death and we spend way little time talking about health, vitality and capabilities.”
Up to 50 million Americans have at least one of these risk factors for Alzheimer’s
Low mental activity
Decreased social engagement
Low muscle mass and physical activities
SOURCE: Florida Atlantic University College of Medicine
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