Learn about Lewy Body DementiaLewy Body Dementia or LBD is the second-most common cause of neurodegenerative dementia. Learn more about this underdiagnosed, but common form of dementia that affected actor Robin Williams and currently impacts nearly 1.4 million Americans and their families.

What is Lewy Body Dementia?

LBD is form of dementia caused by a buildup of abnormal protein deposits, called Lewy bodies, that develop and disrupt nerve cells in specific areas of the brain. These protein deposits may result in a depletion of dopamine, causing Parkinson’s-like symptoms, and depletion of acetylcholine, causing changes in perception, thinking, and behavior.  Lewy Body Dementia can cause a rapid decline in a patient’s balance, motor skills and memory. Sometimes, LBD causes the patient to suffer from hallucinations and nightmares. It typically begins at the age of 50 and is a progressive illness, meaning symptoms worsen over time.

This disease was discovered in the 1900s by Frederick H. Lewy and accounts for more than 15% of all dementia cases. Since LBD has two types – dementia with Lewy bodies and Parkinson’s disease dementia –  and shares many common causes and symptoms of Alzheimer’s and Parkinson’s,  it may take more than a year or two to formally diagnose.

Living with LBD

Pursuing a formal and early diagnosis of LBD is important to one’s quality of life and independence. It is important to educate your family and friends about your diagnosis so they can better understand the possible changes in your movement, thinking, and behavior. Sharing your illness will help build the support you need as the disease progresses.

Work on creating a safe home environment. Identify areas in your home that may create fall risks because of lighting, clutter, or stairs. Since people with LBD can be extremely sensitive to certain medications typically used to treat Parkinson’s and Alzheimer’s, obtain a LBS Medical Alert Wallet Card.

Stay positive and focus on all the things you can enjoy and find pleasure doing – like art, music, pets and time with family and friends. Seek sources of emotional support throughout the course of your illness.

Clinical Trials in Patients with LBD

If you would like information about clinical trials for LBD, explore Cleveland Clinic’s clinical trial research program. More general information about clinical trials is also available at HealthyBrains.org/clinical-trials.

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