NINDS Dementia With Lewy Bodies Information Page

Synonym(s): Lewy Body Dementia

Table of Contents (click to jump to sections)

What is Dementia With Lewy Bodies?
Is there any treatment?
What is the prognosis?
What research is being done?
Clinical Trials
Organizations
Additional resources from MedlinePlus

What is Dementia With Lewy Bodies?

Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features: (1) pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech; (2) recurrent visual hallucinations, and (3) parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement. People may also suffer from depression. The symptoms of DLB are caused by the build-up of Lewy bodies – accumulated bits of alpha-synuclein protein -- inside the nuclei of neurons in areas of the brain that control particular aspects of memory and motor control. Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies." The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis. In addition, Lewy bodies are often also found in the brains of people with Parkinson's and Alzheimer’s diseases. These findings suggest that either DLB is related to these other causes of dementia or that an individual can have both diseases at the same time. DLB usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported.

Is there any treatment?

There is no cure for DLB. Treatments are aimed at controlling the cognitive, psychiatric, and motor symptoms of the disorder. Acetylcholinesterase inhibitors, such as donepezil and rivastigmine, are primarily used to treat the cognitive symptoms of DLB, but they may also be of some benefit in reducing the psychiatric and motor symptoms. Doctors tend to avoid prescribing antipsychotics for hallucinatory symptoms of DLB because of the risk that neuroleptic sensitivity could worsen the motor symptoms. Some individuals with DLB may benefit from the use of levodopa for their rigidity and loss of spontaneous movement.

What is the prognosis?

Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There are no known therapies to stop or slow the progression of DLB. Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to DLB in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country. Much of this research focuses on searching for the genetic roots of DLB, exploring the molecular mechanisms of alpha-synuclein accumulation, and discovering how Lewy bodies cause the particular symptoms of DLB and the other synucleinopathies. The goal of NINDS research is to find better ways to prevent, treat, and ultimately cure disorders such as DLB.

NIH Patient Recruitment for Dementia With Lewy Bodies Clinical Trials

Organizations

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Lewy Body Dementia Association 912 Killian Hill Road, S.W. Lilburn, GA 30047 lbda@lbda.org http://www.lbda.org Tel: Telephone: 404-935-6444 LBD Caregiver Link: 800-539-9767 Fax: 480-422-5434	Alzheimer's Disease Education and Referral Center (ADEAR) National Institute on Aging P.O. Box 8250 Silver Spring, MD 20907-8250 adear@nia.nih.gov http://www.nia.nih.gov/alzheimers Tel: 1-800-438-4380 Fax: 301-495-3334
Alzheimer's Association 225 North Michigan Avenue Floor 17 Chicago, IL 60601-7633 info@alz.org http://www.alz.org Tel: 312-335-8700 1-800-272-3900 (24-hour helpline) TDD: 312-335-5886 Fax: 866.699.1246	Family Caregiver Alliance/ National Center on Caregiving 785 Market St. Suite 750 San Francisco, CA 94103 info@caregiver.org http://www.caregiver.org Tel: 415-434-3388 800-445-8106 Fax: 415-434-3508

Related NINDS Publications and Information

The Dementias: Hope Through Research
Information booklet about Alzheimer's disease, vascular dementia, and other types of dementia compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
Planning Workshop on Clinico-pathological Correlations in the Lewy Body Dementias Minutes
Correlations in the Lewy Body Dementias Minutes

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National Institute of Neurological Disorders and Stroke
National Institutes of Health
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Last updated May 16, 2012