A landmark study assessing the value of PET scans in diagnosing Alzheimer’s disease and dementia is providing clarity to one local patient who was among the first in the nation to participate.

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Barbara Andres, 67, a resident at Orchard Park in Clovis, first experienced dementia symptoms nearly 10 years ago, but it wasn’t until 2013 that she and family members figured out the depth of her memory loss and sought greater medical insight. Though an MRI confirmed dementia, whether or not it was caused by Alzheimer’s was unknown.

Andres’ daughter, Brenda Lewis, said it wasn’t until her mother had the PET scan as part of the study that the diagnosis became clear — Andres’ dementia is caused by Alzheimer’s disease.

“I’m very grateful for the study because before she had the PET scan done, we didn’t really know the cause of her memory loss. I feel a little bit better now that we had it done and our doctor got some more information, which has led us in a different direction.”

Andres’ physician, Dr. Loren Alving, said diagnosing the cause of dementia can be tricky. For some patients, it’s easier to ascertain the cause as Alzheimer’s but for those with atypical presentation or whose MRI results are inconclusive like Andres, having a PET scan can provide answers.

The PET scan is able to detect Alzheimer’s by showing the amount of beta-amyloid deposits in the brain. An FDA-approved radiopharmaceutical called Neuraceq is injected in the patient undergoing the scan and the substance clings to the amyloids. If no or few amyloids are detected, the patient is found negative for Alzheimer’s disease, but if there are amyloids in certain parts of the brain, that shows a clear diagnosis for Alzheimer’s.

Alving said the effectiveness of the PET scan is not in question; rather the study seeks to determine whether the scan is valuable enough to patients to warrant coverage under Medicare.

“The idea is to analyze the physician and the family’s use of the results, so is there a reason to order a scan and does it change the therapy down the line — does it change what you do? Do you order different testing? Do you get different treatments? And if so, is that an efficient use of the government’s money? That is what the study is, so it studies the behavior of the patients and the doctors after the scan to see if it is useful,” Alving said.  

More than 35.6 million people worldwide have been diagnosed with a form of dementia and autopsy and clinical studies show there is a 20 to 30 percent misdiagnosis rate in Alzheimer’s disease, which leads to improper management and excess medical costs. While PET scans are costly, the theory is using them may reduce the misdiagnosis rate and lead to better care for patients.

For Andres, the recent Alzheimer’s diagnosis as a result of the PET scan means there may be some options available to treat her symptoms that weren’t recommended before.

“If her diagnosis was, say for example frontal temporal lobe dementia, that would be treated a little differently than Alzheimer’s because there are medications you can use to help alleviate the symptoms of

Alzheimer’s, where those medications may not work for frontal temporal lobe dementia, so this it opens a door to other options and different avenues based on the diagnosis,” Lewis said. “Right now, she doesn’t use any memory meds, just because we thought she had a different type of dementia where they wouldn’t have been as effective.”

Results may not be are clear-cut for all patients involved in the study, Alving said. The two-year study, she said, will evaluate not only results but how families and doctors use those results. If the results of the PET scans don’t change the course of treatment for the majority of patients, Medicare may decide the scans aren’t worth funding.

“Certainly for patients and families, the clarity of diagnosis is very helpful, but the question is it worth all our medical dollars and that is why they are studying it,” Alving said.

The study, officially titled “Imaging Dementia—Evidence for Amyloid Scanning” (IDEAS), is led by the Alzheimer’s Association and managed by the American College of Radiology (ACR) and American College of Radiology Imagining Network (ACRIN) and will enroll a total of 18,488 Medicare beneficiaries age 65 and older who meet specific Appropriate Use Criteria (AUC) from roughly 200 sites throughout the United States.
Andres is the first patient in Fresno to undergo the scan and one of the first in the nation. Fresno was chosen as a location for the study thanks to its University of San Francisco (UCSF) Fresno Alzheimer and Memory Care facility. Alving said all 10 UCSF memory care centers in the state have participants enrolling in the study.

“I think there are a lot of people in the Valley who have some sort of cognitive loss,” Alving said. “Not everybody needs this scan, but for the people who do, it is wonderful we are able to offer it here. They don’t need to travel up to UCSF’s main campus or down to Los Angeles to have the PET scan and be a part of this study.”

While the results of the study are neither good or bad — Andres will still suffer increased memory loss — Lewis said the more dementia and Alzheimer’s is studied, the closer physicians come to understanding how and why it occurs and what, if anything, can be used for treatment, prevention, or one day even a cure.

“There is no cure and no stopping what is happening, but I think the study is good for us and good for everyone because Alzheimer’s is increasing and it is good to study it because they don’t really know how it happens,” Lewis said.

As for Andres, her focus is not on her disease but on enjoying life.
“I’m very happy,” Andres said. “I get up in the morning and get my clothes on and go downstairs and we eat and do a lot of stuff and I’m just very happy.”