How is Lewy Body Dementia (LBD) Diagnosed?
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I remember sitting in the neurologist's office, holding my husband's hand as we received his LBD diagnosis. Like many families, we had spent months trying to understand the changes we were seeing. Some days everything seemed normal, while others felt like we were living in an alternate reality.
Why LBD Can Be So Tricky to Diagnose
Here's the truth that many doctors won't tell you: LBD is one of the most challenging types of dementia to diagnose. Why? Because it's like trying to solve a puzzle where the pieces keep changing shape.
Think about it this way: Your loved one might be sharp and alert for the doctor's appointment in the morning, but confused or dizzy by dinner time. Or they might have trouble walking one day, only to move normally the next.
This "roller coaster" of symptoms can make even experienced physicians scratch their heads.
What makes it even more complicated is that LBD symptoms often overlap with other conditions:
Movement issues might look like Parkinson's disease
Memory problems could seem like Alzheimer's
Sleep disturbances might be mistaken for REM sleep disorder
Mood changes could be diagnosed as depression
We went through all of these over a 4 year period before finally getting a definitive diagnosis. This included:
2 MRIs,
an overnight sleep study and,
a 4-hour psychiatric analysis
Not to mention dozens of doctor visits
The Five Key Signs That Guide Diagnosis
Remember those "five moving parts" of LBD I've talked about before? They're crucial for diagnosis. Here's what doctors look for:
1. Autonomic System Changes
Blood pressure that drops when standing up
Digestive problems that come and go
Body temperature regulation issues
Heart rate variations
2. Behavior and Mood Symptoms
Depression or anxiety that seems out of character
Paranoia or suspicious thoughts
Visual hallucinations (seeing things that aren't there)
Dramatic mood swings
3. Cognitive Fluctuations
Good days and bad days with thinking
Periods of confusion followed by clarity
Changes in alertness throughout the day
Difficulty with planning or problem-solving
4. Movement Symptoms
Stiffness or rigidity
Changes in walking pattern
Small, shuffling steps
Balance problems
Tremors (though not everyone has them)
5. Sleep Disturbances
Acting out dreams during sleep
Excessive daytime sleepiness
Insomnia or restless nights
Changes in sleep patterns
How is LBD Diagnosed?
Here’s what you can expect. It's not a simple "one-and-done" – think of it more like gathering evidence for a case. And it all starts with eliminating any other conditions.
The First Stop: Your Primary Care Doctor
Be prepared with as much information as possible about any symptoms.
They'll typically:
Take a detailed medical history
Do a physical exam
Run basic blood tests to rule out other conditions
Ask about changes you've noticed. This is where a good journal is invaluable.
Once everything else has been eliminated, your primary care doctor will generally refer you to a specialist.
Then: Specialists
Since it’s very possible you’ll be meeting with different specialists, it’s important to be prepared for all of their questions. I reccomend starting a medical journal that includes:
a medical history,
list of current and discontinued medications,
a journal of the symptoms you’ve noticed,
a list of questions you have for them based on their specialty and,
a list of any doctors you’ve seen, the dates of the visit and office phone numbers.
Believe me it will help you answer all of their questions, make the appointments more effective and far less stressful for you.
Over time you’ll find this single resource will become your go-to for any visits to a doctor.
Some of the specialists you might be seeing include:
A neurologist for brain and movement issues
A sleep specialist for sleep problems
A psychiatrist for behavior changes
A cardiologist for blood pressure concerns
During this phase you might encounter these tests:
Cognitive assessments (think memory and thinking tests)
Brain scans (MRI or CT)
Sleep studies
Blood pressure monitoring (sitting and standing)
Movement evaluations
Breakthrough in Diagnosis: The Skin Biopsy Test
Here's some exciting news that gives many families hope: There's now a skin test called the Syn-One Test that can help diagnose LBD and related conditions with remarkable accuracy. This test is performed by a specialist and looks for a specific protein (called phosphorylated alpha-synuclein) in the skin's nerve fibers – think of it as finding footprints of the disease.
Here's what you should know about this test:
How it Works
A specialist takes tiny skin samples from areas like your neck, shoulder, ankle, or thigh
It's minimally invasive – about as uncomfortable as having a mole removed
The samples get tested for those disease-specific proteins
Why It's Important
It's incredibly accurate. According to the National Institute of Health (NIH) it has been shown to be over 95% successful at identifying conditions like LBD
Helps provide a diagnosis earlier, when treatments can be most effective
Provides concrete evidence to support what doctors observe
What to Keep in Mind
While it can confirm the presence of LBD-related proteins, it can't distinguish between LBD and similar conditions like Parkinson's
It works best when combined with other diagnostic tools and clinical observations
Not all medical centers offer this test yet – ask your neurologist about availability
Not all insurances cover the test since it is brand new
While the test is already being used by doctors and is commercially available, researchers are still studying it to further confirm how reliable it is for diagnosing LBD. If you’re considering this test, it’s best to talk to your doctor about whether it’s appropriate for your situation.
Working With Your Healthcare Team
Here's something I learned the hard way: you need to be your loved one's best advocate. Keep these tips in mind:
Finding the Right Doctor & Specialists
Ask your primary care doctor about their experience with LBD cases specifically, or dementia in general. This will make ongoing care and coordination with specialists easier.
Don't be afraid to seek second opinions.
Look for neurologists who specifically mention LBD experience. One great resource is the LBDA.org which collaborates with 20 of the nation’s leading LBD academic medical institutions for advanced LBD diagnosis and treatment.
Inquire about access to newer diagnostic tools like the Syn-One Test
Tracking Symptoms
Keep a journal of changes. Note the date and time of day.
Include what was going on during the episode.
Record both good days and bad. This can help you spot trends.
Take videos of concerning movements or behaviors
During Appointments
Bring your medical journal that includes: medical history, medications (current and discontinued) and symptoms.
Have a list of specific questions. It’s easy to get overwhelmed and forget to ask a question.
Don't downplay any symptoms.
When You Get The Diagnosis
Whether you've just received the diagnosis or you're still searching for answers, remember this: getting an accurate diagnosis is the first step toward better care. It helps you:
Access appropriate treatments
Plan for the future
Understand what to expect
Connect with the right resources
Join support groups who get it
Moving Forward
Nobody hands you a manual for this journey. But knowing what you're dealing with – even when it's hard news – gives you power. You can start learning about LBD, connecting with others who understand, and making plans that work for your situation.
The field of LBD diagnosis is advancing rapidly, with tools like the skin biopsy test giving us new ways to confirm what's happening earlier and more accurately. This means more families can get the answers they need sooner and start appropriate care earlier.
Remember: You don't have to have all the answers right now. Take it one day at a time, and reach out for help when you need it. We’re here for you.
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IMPORTANT: This website is informational only and does not provide medical advice, diagnosis, or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
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