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LBD is the second most common form of progressive dementia — yet one of the least understood. It affects several million families in America and over 11 million worldwide. This guide covers everything families need to know.
Talk to someone who has been there. Our helpline team includes former caregivers who understand LBD firsthand.
Lewy body dementia is a degenerative neurological disease caused by abnormal deposits of a protein called alpha-synuclein — called “Lewy bodies” — that form in nerve cells in the brain regions governing thinking, memory, and movement.
First described in the early 1900s by Friederich H. Lewy while researching Parkinson’s disease, LBD causes a progressive decline in mental abilities. It may also cause visual hallucinations, significant fluctuations in alertness, and — like Parkinson’s disease — rigid muscles, slowed movement, and tremors.
In 2015, LBD found itself in the national spotlight when it was reported that actor Robin Williams had the disease. The cluster of symptoms that define LBD often take years to evolve, resulting in many individuals being incorrectly diagnosed unless their doctors are familiar with the disease.
Caused by Lewy bodies — protein deposits in the brain's nerve cells that disrupt signals controlling thinking, memory, and movement.
Related to Alzheimer's and Parkinson's — shares overlapping features with both, making it uniquely difficult to diagnose correctly.
More common than previously thought — a staining technique developed in the late 1990s revealed how prevalent LBD truly is.
Affects mostly those 50+ — though every person's experience varies widely in symptom type and severity.
The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
Our live helpline connects you with knowledgeable LBD specialists — 12 hrs/day, 7 days/week.
These three diseases are often confused. Understanding the differences is critical for accurate diagnosis and treatment.
— Symptoms
These three diseases are often confused. Understanding the differences is critical for accurate diagnosis and treatment.
Severe loss of thinking abilities interfering with daily activities. Includes trouble with visual/spatial tasks, planning, multitasking, problem solving, and reasoning. Memory problems may not appear early but worsen over time.
Unpredictable changes in concentration, alertness, and wakefulness — from day to day and throughout the day. A person may seem sharp one moment and confused the next, or stare blankly for periods of time.
Seeing or hearing things that aren't present. Visual hallucinations occur in up to 80% of people with LBD, often early on. They are typically detailed — images of people, children, or animals. Auditory hallucinations also occur.
Confusion about time and place. Difficulty with language and numbers. Poor judgment and loss of initiative. Changes in mood and behavior that may be mistaken for psychiatric illness.
Severe loss of thinking abilities interfering with daily activities. Includes trouble with visual/spatial tasks, planning, multitasking, problem solving, and reasoning. Memory problems may not appear early but worsen over time.
Unpredictable changes in concentration, alertness, and wakefulness — from day to day and throughout the day. A person may seem sharp one moment and confused the next, or stare blankly for periods of time.
Seeing or hearing things that aren't present. Visual hallucinations occur in up to 80% of people with LBD, often early on. They are typically detailed — images of people, children, or animals. Auditory hallucinations also occur.
Confusion about time and place. Difficulty with language and numbers. Poor judgment and loss of initiative. Changes in mood and behavior that may be mistaken for psychiatric illness.
Stiffness or rigidity in muscles, often with or without cogwheeling on passive range of motion. May appear early or develop later in the disease course.
Shuffling gait, slow movement, frozen stance, balance problems leading to frequent falls, and stooped posture — features shared with Parkinson's disease.
Smaller handwriting than normal, reduced facial expression, difficulty swallowing, and a weaker voice. These subtle signs may be the first indication of movement problems.
Shaking or tremor, most commonly at rest in any of the four extremities. Less prominent than in Parkinson's disease but may still be present.
Stiffness or rigidity in muscles, often with or without cogwheeling on passive range of motion. May appear early or develop later in the disease course.
Shuffling gait, slow movement, frozen stance, balance problems leading to frequent falls, and stooped posture — features shared with Parkinson's disease.
Smaller handwriting than normal, reduced facial expression, difficulty swallowing, and a weaker voice. These subtle signs may be the first indication of movement problems.
Shaking or tremor, most commonly at rest in any of the four extremities. Less prominent than in Parkinson's disease but may still be present.
Acting out vivid dreams — kicking, punching, thrashing, shouting, or falling out of bed. Often the bed partner notices this first. May appear years before other LBD symptoms.
Sleeping 2 or more hours during the day, despite adequate nighttime sleep. May include episodes of staring into space or appearing drowsy and lethargic while awake.
Difficulty falling or staying asleep, or waking too early. Sleep disruption is common in LBD but frequently goes undiagnosed. A sleep specialist can be an important part of the care team.
An urge to move the legs while resting to relieve unpleasant sensations. Walking or moving usually provides temporary relief.
Acting out vivid dreams — kicking, punching, thrashing, shouting, or falling out of bed. Often the bed partner notices this first. May appear years before other LBD symptoms.
Sleeping 2 or more hours during the day, despite adequate nighttime sleep. May include episodes of staring into space or appearing drowsy and lethargic while awake.
Difficulty falling or staying asleep, or waking too early. Sleep disruption is common in LBD but frequently goes undiagnosed. A sleep specialist can be an important part of the care team.
An urge to move the legs while resting to relieve unpleasant sensations. Walking or moving usually provides temporary relief.
A persistent feeling of sadness, inability to enjoy activities, or trouble with sleep, eating, and normal activities. Common in LBD and may be mistaken for primary psychiatric illness.
Lack of interest in normal daily activities or social events. May appear withdrawn or indifferent to things previously enjoyed.
Intense fear or worry; asking the same questions repeatedly; restlessness seen through pacing, hand-wringing, or irritability. May become angry or fearful when a loved one is absent.
Strongly held false beliefs — such as believing a spouse is having an affair or a relative has been replaced by an imposter (Capgras syndrome). Extreme distrust of others is also possible.
A persistent feeling of sadness, inability to enjoy activities, or trouble with sleep, eating, and normal activities. Common in LBD and may be mistaken for primary psychiatric illness.
Lack of interest in normal daily activities or social events. May appear withdrawn or indifferent to things previously enjoyed.
Intense fear or worry; asking the same questions repeatedly; restlessness seen through pacing, hand-wringing, or irritability. May become angry or fearful when a loved one is absent.
Strongly held false beliefs — such as believing a spouse is having an affair or a relative has been replaced by an imposter (Capgras syndrome). Extreme distrust of others is also possible.
Changes in the part of the nervous system controlling automatic body functions — including heart rate, blood pressure, glands, and muscles.
Orthostatic hypotension (dizziness when standing), frequent fainting, and falls due to sudden drops in blood pressure.
Difficulty regulating body temperature, leading to episodes of sweating or feeling unusually hot or cold.
Urinary incontinence or urgency due to autonomic nervous system changes. Note: UTIs can trigger sudden confusion or aggressive behavior and should be treated promptly.
Changes in the part of the nervous system controlling automatic body functions — including heart rate, blood pressure, glands, and muscles.
Orthostatic hypotension (dizziness when standing), frequent fainting, and falls due to sudden drops in blood pressure.
Difficulty regulating body temperature, leading to episodes of sweating or feeling unusually hot or cold.
Urinary incontinence or urgency due to autonomic nervous system changes. Note: UTIs can trigger sudden confusion or aggressive behavior and should be treated promptly.
People with LBD may not experience every symptom, and severity varies greatly. Any sudden or major change in functional ability or behavior should be reported to a doctor immediately — it may indicate an infection, medication reaction, or other treatable cause.
The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
— Diagnosis
Many doctors are not familiar with LBD, so people often see several physicians before receiving a correct diagnosis. Currently, there is no single test that can definitively diagnose LBD — it can only be confirmed through a brain autopsy after death.
A neurologist is most likely to have the knowledge to diagnose LBD. Geriatric psychiatrists, neuropsychologists, and geriatricians may also be skilled. A general practitioner is often the first stop but may not be familiar with LBD's presentation.
A thorough review of previous and current illnesses, medications, and symptoms — combined with tests of movement and memory — gives the doctor essential information for an LBD diagnosis.
Laboratory studies help rule out other diseases and hormonal or vitamin deficiencies that can be associated with cognitive changes. Neuropsychological tests assess memory and cognitive function.
A DaTSCAN can help differentiate LBD from Alzheimer's by detecting dopaminergic neuron loss. PET scans, MRI, and REM sleep tests may also support an LBD diagnosis.
A skin biopsy through CND Life Sciences is now available and is highly sensitive and specific for LBD and other alpha-synuclein disorders such as Parkinson's disease.
A spinal fluid biomarker test that can help support an LBD diagnosis by detecting alpha-synuclein pathology — one of the newer diagnostic tools available to specialists.
— Screening Tool
Dr. James Galvin, a neurologist at the Comprehensive Center for Brain Health at the University of Miami, developed a 3-minute test to help evaluate signs of LBD. The test contains 10 yes-or-no questions. Six of them cover non-motor symptoms such as unreasoned thinking, hallucinations or excessive sleep and four include motor symptom aspects such as rigidity in the arms and legs, slowness of movement and trouble with balance. This test should be performed by a physician (preferably a neurologist).
— Treatment
There is currently no cure for Lewy body dementia. Treatment is focused on managing individual symptoms. Physicians familiar with LBD generally start at the lowest dose and increase slowly — go low and go slow.
Sudden onset of confusion or aggressive behavior may not be disease progression. Check first for medication changes, UTI or other infection, dehydration, or environmental triggers like new objects causing hallucinations.
Medications like rivastigmine (Exelon) increase neurotransmitter levels important for memory and judgment. May improve alertness, cognition, and reduce hallucinations. Side effects include GI upset and increased salivation.
Carbidopa-levodopa (Sinemet) can reduce parkinsonian symptoms like rigidity and slow movement in some patients. However, they may also increase confusion, hallucinations, and delusions.
Only quetiapine (Seroquel) may sometimes be considered at very low doses. Most antipsychotics carry serious risk of severe reactions in LBD. See medications warning →
A sleep specialist plays an important role. Clonazepam or melatonin may help with REM sleep behavior disorder. Treating sleep issues can significantly improve daytime functioning and quality of life.
Physical and occupational therapists experienced with LBD can help maintain mobility, reduce fall risk, and improve daily functioning. Speech therapy may help with swallowing difficulties.
Education, respite care, support groups, and counseling for caregivers are essential components of LBD care. LBDRC's helpline connects families with local resources and compassionate guidance. Find support →
The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
— ⚠️ Critical Information
People with LBD are extremely sensitive to certain medications. This is one of the most important things every caregiver, doctor, and emergency professional must know.
First-generation antipsychotics such as haloperidol (Haldol) should NOT be used to treat Lewy body dementia. They may cause severe confusion, severe Parkinsonism, extreme sedation, and in some cases death. Even second-generation antipsychotics should only rarely be prescribed at the lowest possible dose, and only when benefits clearly outweigh risks.
Including haloperidol (Haldol). Can cause severe confusion, severe Parkinsonism, and sedation. May result in death. Should never be prescribed for LBD patients.
More likely than other antipsychotics to cause serious side effects in LBD, including increased confusion, worsened Parkinsonism, extreme drowsiness, and low blood pressure. In rare cases, neuroleptic malignant syndrome — a potentially fatal condition — may occur.
May help movement symptoms but can worsen hallucinations and delusions. Requires careful balance and monitoring by a specialist familiar with LBD. Go low and go slow.
The antipsychotic most commonly considered in LBD when absolutely necessary. Must still be used at the lowest possible dose with close monitoring. Not appropriate for all patients.
If surgery is planned, always inform the anesthesiologist in advance about the LBD diagnosis. People with LBD who receive certain anesthetics may become confused or delirious and experience a sudden, significant decline in functional abilities that may be permanent. Ask about spinal or regional block alternatives to general anesthesia. Discuss careful management of pain relievers, which can cause delirium in LBD patients.
Advancing toward a cure
LBDRC advocates for increased research funding and promotes essential scientific advances. In advance of a cure, early diagnosis and improved quality of life remain our vision.
Ongoing trials are investigating new treatments, biomarkers, and diagnostic tools for LBD. Participation helps advance science for future patients.
LBDRC is a founding member of Lewy Body International — a coalition of organizations spanning 4 continents and 9 countries working to accelerate research and support.
Browse peer-reviewed research, clinical guidelines, and educational publications curated by our Medical Advisory Council.
The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
— We're Here to Help
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