What is LBD

The guide to

Lewy Body Dementia

LBD diagnosis and progression

Treatment options and research

Lewy body dementia vs. Alzheimer's

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What is Lewy body dementia?

Neuron

Lewy body

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.

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LBD vs. Alzheimer's

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

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.

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.

More symptoms

Different causes

Faster progression

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Two types of LBD

Cognitive changes happen first, or together with physical symptoms.

Parkinson's disease dementia

Physical symptoms (Parkinsonism) tend to happen first.

Dementia with Lewy bodies

Sleep disorders

Tremors

Difficulty with thinking and reasoning

Muscle stiffness

Physical changes happen first, like difficulties with movement.

Poor visual and spatial awareness

Shuffling walk

Hallucinations

Slow movement

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How Is LBD diagnosed?

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

Symptoms ofLewy body dementia

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Hallmarks of LBD

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.

"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."

Patient Perspective

Don KentRetired lawyer, living with LBD

HEAR DON'S STORY

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Is LBD inherited?

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.

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.

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Progression of LBD

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

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

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

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Treatments for LBD

Drug treatments:

Cholinesterase inhibitors e.g., Aricept and Levodopa

Side Effects

Non-Drug interventions:

Speech, physical, cognitive therapies, individual & family psychotherapy

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Want to learn more?

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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.

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

• 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

• 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

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

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