A Lewy body dementia (LBD) diagnosis can be confusing, overwhelming, and—oftentimes—misleading.
LBD is one of the most misdiagnosed forms of dementia, often mistaken for Alzheimer’s, Parkinson’s, or even psychiatric disorders. If your loved one has recently been diagnosed (or if you’re noticing unusual cognitive and movement-related symptoms), it’s important to understand what sets LBD apart—and how to get the proper care.
That’s why Kensington Park Senior Living hosted an exclusive virtual event: “Lewy Body Dementia, Parkinson’s & Alzheimer’s: Treatments & Diagnosis.”
This event featured top experts in neurodegenerative diseases, including Dr. Keith Fargo from the Lewy Body Dementia Association, Dr. Connor Courtney from the Parkinson’s Foundation, and Claire Day from the Alzheimer’s Association.
Let’s break down how LBD is diagnosed, how it differs from Alzheimer’s and Parkinson’s dementia, and the latest treatments.
What is Lewy body dementia?
Lewy body dementia (LBD) is a progressive brain disorder that affects thinking, movement, behavior, and sleep.
It happens when abnormal protein deposits (Lewy bodies) build up in brain cells, leading to cognitive decline, visual hallucinations, fluctuations in alertness, and motor symptoms similar to Parkinson’s.
LBD is often confused with Alzheimer’s and Parkinson’s. But unlike those conditions, LBD symptoms tend to fluctuate, with moments of clarity followed by sudden confusion or hallucinations.
How is Lewy body dementia diagnosed?
Diagnosing LBD is tricky because its symptoms overlap with Alzheimer’s and Parkinson’s, leading to misdiagnosis in nearly 50% of cases.
Doctors use a combination of:
- Cognitive tests to assess memory, problem-solving, and attention
- Imaging scans (MRI, CT, PET scans) to rule out other conditions
- Sleep studies to check for REM sleep behavior disorder (a common early sign of LBD)
- Parkinson’s symptom assessments since many LBD patients develop tremors and stiffness
There is no single test to confirm LBD, which is why getting evaluated by a specialist familiar with the disease—such as the experts speaking at our event—is critical.
Lewy body dementia vs. Parkinson’s disease vs. Alzheimer’s: Key differences
LBD is closely linked to both Parkinson’s disease and Alzheimer’s, but they’re not the same.
Here’s a breakdown of how they compare:
Lewy Body Dementia (LBD)
- Main symptoms: Cognitive fluctuations, hallucinations, movement issues
- Key differences: Symptoms fluctuate, visual hallucinations are common
Parkinson’s Disease (PD)
- Main symptoms: Tremors, stiffness, slow movement
- Key differences: Cognitive issues may develop later, not early
Alzheimer’s Disease:
- Main symptoms: Memory loss, confusion, personality changes
- Key differences: Doesn’t involve early movement symptoms or hallucinations
One big distinction? People with LBD often have hallucinations early in the disease, while Alzheimer’s patients don’t.
Likewise, Parkinson’s disease usually starts with movement problems, while LBD tends to affect both cognition and movement early on.
Why is Lewy body dementia often misdiagnosed?
Since LBD symptoms come and go, it can appear like multiple conditions at once, leading to years of incorrect treatment.
This is why getting a proper diagnosis from a specialist early on can make a world of difference in getting the right care.
What are the latest treatments for Lewy body dementia?
There is no cure for LBD, but treatments can help manage symptoms:
- Cognitive symptoms: Medications like cholinesterase inhibitors (Donepezil, Rivastigmine) help improve memory and thinking.
- Hallucinations & agitation: Low-dose antipsychotics may be used, but many antipsychotic drugs are dangerous for LBD patients, so doctors must be careful.
- Movement issues: Parkinson’s medications like Levodopa may help but can worsen confusion.
- Sleep disturbances: Melatonin and clonazepam help manage REM sleep behavior disorder.
- Therapies & lifestyle changes:
- Physical therapy for balance and strength
- Speech therapy for swallowing and voice issues
- Cognitive training to maintain mental function
Breakthrough research & future treatments
While no cure exists yet, these advances give hope for better treatments in the future.
Scientists are exploring new treatments for LBD, including:
- Stem cell therapy to replace damaged brain cells
- Monoclonal antibodies to target Lewy body proteins
- Deep brain stimulation (DBS), already used in Parkinson’s, to help with LBD movement symptoms
Famous people diagnosed with Lewy body dementia
Awareness of LBD grew after actor Robin Williams’ posthumous diagnosis. His sudden personality changes and hallucinations were initially misdiagnosed as depression.
Other notable figures include:
- Estelle Getty (Golden Girls actress): Initially misdiagnosed with Alzheimer’s
- Ted Turner (media mogul and founder of CNN): Publicly revealed his LBD diagnosis in 2018
- Tom Seaver (baseball legend): Diagnosed after years of cognitive struggles
Caring for someone with Lewy body dementia
LBD caregiving can be challenging, but you’re not alone.
Memory care communities like Kensington Park provide specialized support for both early and late-stage LBD patients, including:
- 24/7 nursing care for fluctuating symptoms
- Personalized therapy programs (art, music, exercise)
- Secure environments to prevent wandering
- Medication management to balance cognitive and motor symptoms
If you’re struggling with caregiving or diagnosis confusion, our team is here to answer any questions you have.
Our Promise is to Love and Care for Your Family as We Do Our Own
At Kensington Park Senior Living, we know that navigating a Lewy body dementia diagnosis can be overwhelming.
That’s why our memory care neighborhoods are designed to provide unparalleled support for residents at all stages of LBD, Alzheimer’s, and Parkinson’s dementia. We offer three levels of memory care, ensuring personalized support for individuals in both the early and late stages of these conditions.
Our on-site physical rehabilitation helps residents maintain mobility, independence, and quality of life.
To enhance comfort and well-being, we provide all-day dining with customized diets personalized to meet individual needs, including modified meals for those with swallowing difficulties.
We’re more than just a care provider—we’re a family, a resource, and a place of comfort.
Contact Kensington Park today to learn how we can support you and your loved one on the journey of a Lewy body dementia diagnosis.