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PUB_Diagnosing Alzheimer's

Deborah Kan

Created on April 1, 2024

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Transcript

The guide to

Diagnosing Alzheimer's

Why misdiagnoses happen

How Alzheimer's is diagnosed

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The difficulty of a diagnosis

1 in 5

patients are misdiagnosed

Dementia, including Alzheimer’s, Parkinson’s, Lewy Body, FTD and more, are difficult to correctly diagnose. Different diagnostic methods have different strengths and weaknesses, are used for different purposes, which makes it important to understand how dementias are diagnosed. This is important because early diagnosis opens up a world of options when it comes to better care, and even access to treatments that could slow the course of the disease.

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Why is an Alzheimer's diagnosis so hard to get right?

“When doctors diagnose Alzheimer's disease without a confirmatory test, they are wrong about 30 percent of the time."– Sharon Cohen, Director of the Toronto Memory Program

Expensive procedures
Overlapping symptoms
Lack of specialized training

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The pain of being misdiagnosed

Painter, avid cook, and patient advocate Michael Belleville was told he had Alzheimer's, only to discover several years later he had Lewy body dementia. He told Being Patient what changed doctors' minds about his diagnosis.

Patient Perspective

"Every single one of [the tests] all came back and said probable neurological disorder, probable Alzheimer’s. They are never going to come right out and tell you with 100 percent certainty that it’s Alzheimer’s.… ...they thought it was depression, so you go through that procedure for six months or longer, and then [they thought] it was something else and that takes longer. The time it went from me being diagnosed with younger-onset Alzheimer’s to Lewy Body was about two or two and a half years.

Michael Belleville, Patient Advocate

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Real-life stories of misdiagnosis

For many, getting an accurate diagnosis takes months or years. Read about patients and families who pushed for answers:

Terrie Montgomery

Myra Garcia

A long road to diagnosis

Misdiagnosed with ADD

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Cognitive screening for Alzheimer's

The Montreal Cognitive Assessment (MoCA) is a common screening tool used to evaluate short-term memory, executive function, attention, focus, and more.

However, this test is not meant for self-diagnosis and it is important to conduct it with a healthcare professional - research found education level, hearing loss, and language proficiency can all affect test results.

Above: An example of a MoCA test in English

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Early signs and symptoms

When Doreen Monks first started showing symptoms of Alzheimer’s disease, she had already been working as a neurology nurse practitioner for 35 years. She shared with Being Patient what it felt like when her signs of Alzheimer’s first started to present.

Patient Perspective

“I had no clue. Now, retrospectively, it was very clear. [In] the years when I was taking on more and more administrative work — and quite frankly, I hate paperwork — it became harder and harder and harder for me to do it. I kept thinking, ‘What is wrong with you? This is not rocket science.’ I mean, I was just having a hard time grasping it.”

Doreen MonksNeurology Nurse Practitioner

Read more

narration

Signs of mild cognitive impairment

Repeated questions
Struggling with familiar tasks
Disorientation

“Changes like that together with a low score on a cognitive test; that’s the key to making a diagnosis of mild cognitive impairment.” – Dr. Barak Gaster, Director of Cognition in Primary Care program

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Read more

Image source: skin test: DISCERN™ Lumbar puncture: InlandImaging AI tools: RealResearch Retinal scan: JoVE Journal

Six ways doctors diagnose Alzheimer's

Alzheimer's disease is the most common form of dementia. Because screening tests (like MoCA) may not be conclusive, additional methods exist to confirm a diagnosis:

In development

Emerging

Well-established

Skin Tests

Blood Tests

Brain Scans

Retinal Scans

Lumbar Puncture

AI Tools

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"Don’t let doctors dismiss your complaints"

Neurologist Marwan Sabbagh discusses what patients should do if they think they may be experiencing symptoms of cognitive decline.

Neurologist Perspective

"Primary care physicians don’t feel comfortable making a diagnosis... The patient should be asking about the new blood tests, the new scans, the new technologies; they should not be letting doctors dismiss their complaints."

Dr. Marwan SabbaghProfessor and the Vice Chair of Research, Barrow Neurological Institute

Read more

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What happens after a diagnosis

If you were diagnosed with Alzheimer's and are unsure how to proceed. Here’s what to do next:

  • Research more about living with dementia and what it means for the future
  • Seek a specialist (neurologist, geriatrician, or neuropsychologist)
  • Explore treatment options and lifestyle interventions
  • Involve family and create a care plan
  • Organize legal and financial documents early
  • Consider participating in research

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Read more about a dementia diagnosis

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Want to learn more?

Visit

beingpatient.com

for the latest news and information on brain health and Alzheimer's disease

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Confirmatory tests like PET amyloid scans and spinal taps, are expensive. Until recently, these scans were not covered by Medicare, making them inaccessible to many.

Brain health issues — especially neurodegenerative diseases — are complicated, and many of them have overlapping symptoms.

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Skin tests promise to differentiate Alzheimer’s from other dementias with high accuracy, reinforcing the diagnosis.

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Dementia

Normal

Image soruce: JoVE Journal

Retinal scans look for changes in the retina that may reveal abnormalities within the brain.

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“[My doctor said] ‘You might be at the change of life. You might be working too much. So then he said, ‘Let’s just watch it.’ Six months later, and tests, and that was it. I had it [Alzheimer’s].”

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Lumbar puncture extracts cerebrospinal fluid to identify biomarkers like beta-amyloid and tau proteins.

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CT and MRI scans look for abnormalities, while PET scans can detect beta-amyloid plaque.

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The FDA recently approved the first blood test to detect Alzheimer’s, opening the door to Medicaid coverage. Blood tests detect amyloid or tau protein and are becoming more widely available. But cost and insurance coverage vary. New practice guidelines from the Alzheimer’s Association only recommend using blood tests in individuals who already have been diagnosed with cognitive impairment.

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AI technologies help analyze data from various sources, such as blood samples, speech patterns, and genetic profiles to enable early detection.

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Some physicians may be reluctant to diagnose dementia due to the absence of a clear-cut test and the difficulty in communicating a diagnosis that has no cure.

“I thought it was Alzheimer’s disease, but I went to doctors many, many times, and they all said, “You are fine.” There was one doctor who did a whole bunch of testing, and at the end of the day, she says, “What you have is ADD.” When I was told [it was] ADD, I will tell you I burst into tears of joy because it was not Alzheimer’s, and so I was on those drugs for a number of years. It seemed like it was working fine, but ultimately it really wasn’t. I found a neuropsychiatrist, and that was the beginning of my new me.”

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