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Robin Williams may have killed himself due to Lewy body dementia

Actor Robin WilliamsLewy body disease is one of the most common causes of dementia in the elderly

Nov 4, 2015 – Actor Robin Williams, who had been diagnosed with Parkinson’s disease, died without knowing he was actually stricken with Lewy body dementia (LBD), his wife, Susan Williams, said today on Good Morning America. The original diagnosis did not cover all of his symptoms and she believes the effects of LBD led him to take his own life.

Lewy body disease is one of the most common causes of dementia in the elderly, according to the National Institute of Neurological Disorders and Stroke.

The NIH reports, “Dementia is the loss of mental functions severe enough to affect normal activities and relationships. Lewy body disease happens when abnormal structures, called Lewy bodies, build up in areas of the brain. The disease may cause a wide range of symptoms, including

         Changes in alertness and attention


         Problems with movement and posture

         Muscle stiffness


         Loss of memory


“Lewy body disease can be hard to diagnose, because Parkinson's disease and Alzheimer's disease cause similar symptoms. Scientists think that Lewy body disease might be related to these diseases, or that they sometimes happen together.

“Lewy body disease usually begins between the ages of 50 and 85. The disease gets worse over time. There is no cure. Treatment focuses on drugs to help symptoms.”

 “LBD is commonly mistaken for Parkinson’s or Alzheimer’s disease, or a psychiatric disorder because of overlapping features,” says Dr. Dan Kaufer, a member of the Scientific Advisory Council for the Lewy Body Dementia Association (LBDA), the only national health organization dedicated to LBD.

“LBD, which affects 1.4 million people and is the second most progressive dementia after Alzheimer’s disease, finally has a seat at the table,” said Angela Taylor, Director of Programs at LBDA, who was recently named a member of the U.S. Department of Health & Human Services (HHS) Advisory Council on Alzheimer’s Research, Care and Services. She became the first on the council as an advocate for the LBD community,

Dr. Kaufer, who is Director of the Memory Disorders Program at the University of North Carolina in Chapel Hill, added that “Patients who are misdiagnosed may not receive potentially beneficial medications or are prescribed medications that make symptoms worse.”

“The LBDA has diligently shared this and other news about LBD for years to educate the healthcare community and families, but awareness has been slow in coming,” said Michael Koehler, president of LBDA’s Board of Directors.

“Because Robin Williams was such a universally beloved actor and comedian, Susan Williams’ story has a significant impact in expanding awareness.”

This was clear to the Association shortly after the GMA interview aired, when calls came into the Atlanta offices of the LBDA from CNN, Time Magazine, The Guardian, and The New York Times, requesting interviews. By day’s end the website crashed and was down for several hours. It’s back up and running and late last evening brought another live interview for the LBDA with BBC Radio.

The website provides detailed information about

         differentiating LBD, Parkinson’s and Alzheimer’s symptoms;

         online and in-person support groups;


         treatment, and

         other resources.

Prior to the Williams’ news, on October 14, the Association sent out a news release entitled, “An Actual Awareness Month for a Disease With Little to No Awareness,” heralding the sixth annual October recognition of national Lewy Body Dementia Awareness Month.

“We’re gaining traction,” added Koehler, “which can only serve to help more people get the correct early diagnoses and support.”

More About the Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) says it “is a nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive and behavioral symptoms, is a ‘family disease.’ It dramatically affects not only the person diagnosed but also the primary caregiver. The only national health organization dedicated to LBD, LBDA supports all those affected by Lewy body dementias through outreach, education and research.” Learn more about LBD and LBDA, at

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