What is LBD

guide to

Treatment options and research

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Lewy Body Dementia

Lewy body dementia vs. Alzheimer's

LBD diagnosis and progression

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Before we begin…

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Lewy body

Neuron

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Some 1.4 million Americans live with Lewy body dementia (LBD) , making it the second most common type of dementia after Alzheimer’s disease. It is caused by Lewy bodies, which are protein deposits that develop in nerve cells in the brain. As Lewy bodies build up, their deposits affect thinking, memory and movement. It sometimes presents with Parkinson's disease.

What is Lewy body dementia?

LBD is caused by Lewy bodies, while Alzheimer’s is believed to be caused by amyloid plaques, tau tangles, inflammation, or infections.

LBD patients can experience hallucinations and sleep disorders, in addition to physical symptoms such as muscle rigidity, tremors, and balance issues.

While both diseases affect memory, LBD has additional symptoms and often progresses more rapidly than Alzheimer’s. This leads to faster decline in cognitive and physical functioning.

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Unlike Alzheimer's, LBD patients often experience hallucinations early on, which can be a key indicator in distinguishing between the two conditions.

Different causes

More symptoms

Faster progression

LBD vs. Alzheimer's

Slow movement

Shuffling walk

Muscle stiffness

Tremors

Physical symptoms (Parkinsonism) tend to happen first.

Physical changes happen first, like difficulties with movement.

Parkinson's disease dementia

Difficulty with thinking and reasoning

Poor visual and spatial awareness

Hallucinations

Sleep disorders

Cognitive changes happen first, or together with physical symptoms.

Dementia with Lewy bodies

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Read more on beingpatient.com

Two Types of LBD

Symptoms ofLewy Body dementia

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LBD is diagnosed through verbal examination. Imaging tests can sometimes be used to confirm a diagnosis, but are not required.

How Is LBD diagnosed?

Don KentRetired lawyer, living with LBD

Patient Perspective

HEAR DON'S STORY

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"I was never asked about my sleep until I got to the Mayo clinic, and that’s six neurologists in the end who didn’t ask me about my sleep patterns… After it happened, I learned you can have hallucinations of all your senses and I had this change in my sense of taste, and it really does change."

LBD can be difficult to distinguish from similar diseases. In fact, one in three people living with Lewy body dementia are misdiagnosed at first. Don Kent, who was misdiagnosed six times, shares his first signs, difficulty in getting diagnosed, and his life with LBD.

Hallmarks of LBD

Read more on beingpatient.com

Known risk genes for LBD:

Accurate genetic tests for LBD are not available yet, but it is an active area of research in diagnostic trials.

Up to 60 percent of the risk of LBD may be genetically determined, although the link is not clear-cut. However, people without those gene mutations can also develop LBD.

Is LBD inherited?

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Obvious cognitive and movement decline, sleep disorders, behavioral changes, and increased paranoia.

Significant mental and physical decline, speech difficulties, and muscle rigidity. Patients will need full assistance in their daily lives.

Mild symptoms, resembling age-related cognitive changes. Some movement difficulties may arise, but memory remains mostly intact.

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Progression of LBD

Obvious cognitive and movement decline, sleep disorders, behavioral changes, and increased paranoia.

Significant mental and physical decline, speech difficulties, and muscle rigidity. Patients will need full assistance in their daily lives.

Mild symptoms, resembling age-related cognitive changes. Some movement difficulties may arise, but memory remains mostly intact.

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Progression of LBD

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Side Effects

Non-Drug interventions:

Drug treatments:

Speech, physical, cognitive therapies, individual & family psychotherapy

Cholinesterase inhibitors e.g., Aricept and Levodopa

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Treatments for LBD

“What To Expect After a Dementia Diagnosis”

To learn more about research participation, have a look at our guide on

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Research is helping scientists learn more about what causes the disease and how to better prevent and treat it. Ask your physician about clinical trials you may be eligible for and whether you could access experimental diagnostics and interventions.

Considering a clinical trial?

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Want to learn more?

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The LBCRS is one of multiple tools a doctor can use to diagnose LBD. It is not meant for self-diagnosis and answering yes to these questions does not constitute a diagnosis. Please consult a medical professional for an official evaluation

• Episodes of illogical thinking or incoherent, random thoughts

• Frequent staring spells or periods of blank looks

• Visual hallucinations (seeing things not really there)

• Acting out dreams (kicking, punching, thrashing, shouting, or screaming)

• Orthostatic hypotension or other signs of autonomic insufficiency

• Slowness in initiating and during movement or frequent hesitations or pauses during movement

• Rigidity (with or without cogwheeling) on passive range of motion in any of the 4 extremities

• Loss of postural stability (balance) with or without frequent falls

• Tremor at rest in any of the 4 extremities or head

• Excessive daytime sleepiness or seeming drowsy and lethargic when awake

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Did the patient have these symptoms at least three times in the past six months?

link to LBCRS pdf

How is LBD diagnosed?

A Lewy Body Composite Risk Score (LBCRS) of 3 or greater represents a high probability that Lewy bodies are contributing to cognitive decline.

LBD can be diagnosed through verbal examination. Imaging tests can be used to confirm a diagnosis, but are not mandatory.

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How is LBD diagnosed?

Behavioral & Psychiatric Symptoms

• Unpredictable episodes of confusion, hallucinations, delusions.
• Mood swings, depression, anxiety

Physical Symptoms (Parkinsonism)

• Muscle rigidity, decreased mobility, tremors
• Difficulty with balance and facial expressions

Autonomic Functions

• Fluctuations in blood pressure, bowel/bladder issues.
• Impaired sense of smell, speech difficulties

Levodopa is typically given to Parkinson’s patients, and may help treat movement problems for LBD. However, it may cause fatal side effects (especially if misdiagnosed), so patients should talk to a doctor who specializes in LBD before taking any medication.

The above list is based on the LBCRS tool that doctors can use to diagnose LBD. Please consult a medical professional for an official evaluation

• Illogical thinking or incoherent, random thoughts

• Frequent staring spells or periods of blank looks

• Seeing things not really there

• Acting out dreams in sleep

• Sudden blood pressure drop when getting up

• Slowness or frequent pauses in movement

• Rigidity or passive range of motion

• Loss of balance with or without frequent falls

• Tremors in arms, legs or the head, while at rest.

• Excessive daytime sleepiness or lethargy when awake

Did the patient have these symptoms at least three times in the past six months?

Executive Functions

• Challenges in planning, reasoning, multitasking, and daily tasks
• Memory loss, unstable cognitive abilities

Sleep Issues

• Insomnia, REM sleep behavior disorder, excessive daytime sleepiness.
• Restless Leg Syndrome