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NINDS Dementia With Lewy Bodies Information Page

Synonym(s):   Lewy Body Dementia

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What is Dementia With Lewy Bodies?

Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central features of DLB include progressive cognitive decline, “fluctuations” in alertness and attention, visual hallucinations, and parkinsonian motor symptoms, such as slowness of movement, difficulty walking, or rigidity.  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) and other institutes of the National Institutes of Health conduct research related to DLB in laboratories at the NIH and support 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

Column1 Column2
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
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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated May 22, 2014