Lewy Body Dementia Fast Facts

Lewy body dementia (LBD) is a progressive brain disorder that causes both mental and movement-related symptoms.

Lewy body dementia afflicts approximately 1.4 million Americans.

LBD is the second-most common form of dementia after Alzheimer’s disease.

LBD is caused by abnormal accumulations of proteins in the brain.

LBD most often affects people over the age of 50. In addition, people with a family history of the disease are at increased risk.

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Lewy body dementia afflicts approximately 1.4 million Americans.

What is Lewy Body Dementia?

Lewy body dementia (LBD) is a degenerative brain disease that causes cognitive impairment and movement-related symptoms. LBD progresses gradually, eventually having a profound effect on the sufferer’s ability to function, both mentally and physically. Symptoms may be mild at first, but most people with LBD eventually require full-time care.

Cognitive and mental symptoms of LBD include:

  • Visual hallucinations
  • Delusions
  • Paranoia
  • Sudden shifts in concentration or alertness
  • Disorganized thinking
  • Language difficulties
  • Confusion about time and place
  • Depression
  • Anxiety
  • Apathy
  • Restlessness or agitation

Physical symptoms of LBD can include:

  • Insomnia
  • Daytime sleepiness
  • Stiff muscles
  • Slow movements
  • Shuffling walk
  • Stooped posture
  • Muscle tremors
  • Balance and coordination problems
  • Loss of sense of smell
  • Changes in handwriting
  • Problems with swallowing
  • Voice weakness
  • Dizziness or fainting
  • Sensitivity to heat or cold
  • Urinary incontinence
  • Constipation
  • Sexual dysfunction

What Causes Lewy Body Dementia?

LBD is caused by the buildup of a protein called alpha-synuclein in the brain. These buildups form clumps, called Lewy bodies, that interfere with the function and health of nerve cells in the brain. Scientists don’t understand precisely how Lewy bodies affect brain cells, but they lead to the degeneration of brain tissue that causes the disorder’s symptoms.

LBD is related to other degenerative brain diseases. For example, people with Parkinson’s disease usually have Lewy bodies in their brains, and people with LBD typically also have the protein tangles in their brains characteristic of Alzheimer’s disease.

Is Lewy Body Dementia Hereditary?

In most cases, LBD does not seem to be inherited. However, the disorder does appear to run in families in a relatively small number of cases. Sometimes these familial cases appear to be caused by an abnormal change (mutation) in the SNCA or SNCB gene. A person who inherits this mutation from either their mother or father may develop the disease.

Other genetic mutations seem to increase the risk of developing LBD in some cases, but they do not necessarily cause the disorder.

How Is Lewy Body Dementia Detected?

Sleep disruptions are often the first LBD symptoms to appear, followed by signs of dementia. Visual hallucinations and sudden fluctuations in mental function or mood are characteristic of LBD and may help distinguish it from Alzheimer’s disease in the early stages.

How Is Lewy Body Dementia Diagnosed?

To diagnose LBD, a doctor will look for signs of cognitive impairment. Exams and tests will determine the severity of the impairment and rule out other potential causes for the symptoms.

Initial exams will look for symptoms including:

  • Fluctuations in thought processes or alertness
  • Sleep disruptions, including acting out dreams while asleep (REM sleep disorder)
  • Visual hallucinations
  • Parkinson’s-like symptoms

Additional tests may be ordered to rule out other potential causes of the symptoms, including Parkinson’s disease, strokes, thyroid disorders, or depression.

Other diagnostic steps may include:

  • More extensive cognitive exams
  • Consultation with a neuropsychologist or neurologist
  • Imaging exams to look for signs of the disease
  • Interviews with family members or friends


How Is Lewy Body Dementia Treated?

LBD has no cure, but some medical treatments may help moderate the impact of some of the disorder’s symptoms.


Medications used to treat other types of degenerative brain diseases are sometimes effective in treating LBD.

  • Cholinesterase inhibitors include galantamine, rivastigmine, and donepezil. While scientists do not fully understand how cholinesterase inhibitors work, research shows that they prevent the breakdown of a brain chemical called acetylcholine, vital to memory and thinking. Unfortunately, over time, cholinesterase inhibitors lose their effectiveness.
  • Memantine may help a person in the later stages of the disease maintain basic functioning for a limited time. Because these drugs work differently from cholinesterase inhibitors, the two types of medicines can be prescribed in combination.
  • Parkinson’s medications such as carbidopa-levodopa may be used to treat LBD’s movement-related symptoms. However, these medications may worsen other symptoms, such as hallucinations or confusion.

How Does Lewy Body Dementia Progress?

LBD causes symptoms that progressively worsen, and people with the disorder eventually experience severely debilitating and life-threatening effects. In the early stages, symptoms may be relatively mild and challenging to notice, but most people with LBD require full-time care within years after symptoms initially appear.

Life expectancy for people with LBD varies from case to case, but survival for 5-7 years after diagnosis is typical.

How Is Lewy Body Dementia Prevented?

There is no known way to prevent LBD. In the absence of a proven preventive strategy, the best course of action is to follow the general recommendations for maintaining cognitive health over time. These recommendations include:

  • Exercise regularly.
  • Eat a healthy diet rich in fruits, leafy greens, fish, and nuts.
  • Spend time with family and friends.
  • Keep your mind active and engaged.
  • Control Type 2 diabetes.
  • Keep blood pressure and cholesterol at healthy levels.
  • Maintain healthy body weight.
  • Stop smoking.
  • Seek treatment for depression.
  • Avoid alcohol.
  • Get plenty of sleep.
  • Watch for significant changes in memory, thinking, and reasoning.

Lewy Body Dementia Caregiver Tips

The most important thing you can do for a loved one with LBD is show love and support. The disorder affects every aspect of daily life. Ways to help include:

  • Keep things simple. Embrace a daily routine, so your loved one knows when things will happen.
  • Help to improve your loved one’s sleep schedule. Limit naps and plan activities that use energy early in the day. For example, try bathing in the morning or having the largest meal in the middle of the day.
  • Let your loved one know that they are safe. Try not to argue with the person about what they see or hear. Comfort the individual instead

Many people with LBD also suffer from other brain-related issues, a condition called co-morbidity. Here are a few of the disorders commonly associated with LBD:

Lewy Body Dementia Brain Science

Because of LBD’s relationship to Parkinson’s disease (PD), research into PD shows some of the best promise for future LBD treatment and prevention. Areas of current research include:

  • Inflammatory reactions. Any damage in the brain triggers a flood of inflammatory chemicals to repel the intruder. Chronic inflammation kills off neurons and allows a rogue protein to accumulate in the neurons. Deposits of this protein, called “Lewy bodies,” disrupt thinking and behavior and are a factor in both LBD and Parkinson’s-related dementia.
  • Gut microbiome. Researchers now suspect that the earliest stages of the disorder occur in the gastrointestinal tract. Lewy bodies that accumulate in the brain are also found in the gastrointestinal nervous system. Beneficial bacteria and other gut microbes, if they can be identified, could potentially open new avenues for treatment.
  • Immune response. The immune system is responsible for fighting infections in the body, but sometimes immune-system responses go wrong, causing the body to attack its own cells. Some scientists suspect that abnormal proteins may trigger the immune system to destroy healthy nerve cells in the brain.
  • Stem cells. Early-stage clinical trials involving stem cell-derived therapies are driving pioneering research. “Pluripotent” stem cells — grown from the patient’s own skin — can generate into any cell type in the body. The most promising approach to reverse PD or LBD symptoms involves using these cells to replace the dopamine-producing neurons that have been lost.

Lewy Body Dementia Research

Title: Impact of Nilotinib on Safety, Tolerability, Pharmacokinetics, and Biomarkers in Dementia With Lewy Bodies

Stage: Recruiting

Principal investigator: Fernando L. Pagan, MD

MedStar Georgetown University Hospital

Washington, DC

Dementia with Lewy Bodies (DLB) is an alphasynucleinopathy and the second most common form of dementia in the elderly. DLB shares striking neuropathological and clinical similarities with both Parkinson’s disease (PD) and Alzheimer’s disease (AD). Nilotinib (Tasigna®, AMN107, Novartis, Switzerland) is approved by the FDA and is well tolerated for CML treatment at oral doses of 600-800mg daily. The Investigators propose to perform a phase II randomized, double-blinded, placebo-controlled study to evaluate the impact of Nilotinib in patients with DLB.

A phase II randomized, double-blinded, placebo-controlled study will be performed to evaluate the impact of Nilotinib (Tasigna®, AMN107, Novartis, Switzerland) on safety, tolerability, pharmacokinetics, pharmacodynamics, and clinical outcomes in patients with Dementia with Lewy Bodies. Sixty ( 60) participants will be recruited and randomly assigned 1:1 to placebo (arm 1) or 200 mg Nilotinib (arm 2). This study will be conducted in DLB patients with 2.5≥Hoehn & Yahr≤3 and UPDRS I-III ≤50 and 15≥UPDRS III (motor) ≥40 (Unified Parkinson’s Disease Rating Score) and MoCA≥18(Montreal Cognitive Assessment). Eligible participants must be stable on MAO-B inhibitors (Rasageline or Selegeline) for four weeks and must not be on ≥800mg Levodopa daily. Participants must be stable on acetylcholinesterase inhibitors and other medications for at least six weeks. Participants will be treated for six months and monitored every month ( 4 weeks) in a total of 9 visits that include screening, baseline, 1, 2, 3, 4, 5, 6 months follow up, and seven-month washout. Blood and cerebrospinal fluid (CSF) will be collected at baseline and six months to determine Nilotinib’s effects on CSF biomarkers.


Title: Telehealth in Lewy Body Dementia

Stage: Recruiting

Principal investigator: Bhavana Patel, DO

University of Florida

Gainesville, FL

Lewy body dementia (LBD) is the 2nd most common neurodegenerative dementia in the US. Optimal care requires an interdisciplinary approach. However, care often faces barriers that include rural residence, limited access to specialists, travel distance, limited awareness of resources, and physical, cognitive, and behavioral impairments making travel to appointments challenging. Delivering interdisciplinary care remotely using video technology has the potential to improve access to care for patients with LBD.

The purpose of this study is to convert an in-person patient-centric interdisciplinary care model to a virtual platform using stakeholder engagement from individuals with LBD, their caregivers, and healthcare providers. Subsequently, researchers will conduct a prospective, randomized, controlled pilot study implementing the virtual stakeholder-developed interdisciplinary care model (tele-neurohub) for six months and assess the feasibility, acceptability, and appropriateness of the implementation outcomes tele-neurohub model. The research goal is to establish and iteratively improve a virtual interdisciplinary model of care, allowing patients with LBD and their caregivers to access sub-specialty care from their homes.


Title: Distinguishing Between Alzheimer’s Disease, Lewy Body Dementia, and Parkinson’s Disease

Stage: Recruiting

Principal investigator: Douglas W Scharre, MD

Ohio State University

Columbus, OH

The study will use structural and functional MRIs, daTscans, fluorodeoxyglucose (FDG) PET scans, Amyvid PET scans, polysomnographs, neuropsychological testing, cerebrospinal fluid in willing participants to distinguish between a diagnosis of Alzheimer’s disease, Lewy Body dementia, and Parkinson’s Disease. All subjects will have a clinical evaluation, physical examination including vital signs and orthostatic blood pressures and pulses, neurological examination including UPDRS evaluation, genetic blood sample collection, neuropsychological testing, polysomnogram, and neuroimaging. The study partner will also be interviewed for completion of all of the behavioral and functional measures.

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