Many people were shocked to learn earlier this week that Robin Williams died with Lewy Body Dementia.
While most people have heard of Alzheimer’s Disease, the most common form of dementia, not as many know about Lewy Body Dementia – or that it is the second most common form of dementia. Both Robin Williams and Estelle Getty, who played Sophia on “The Golden Girls”, and probably the most widely known celebrities with Lewy Body Dementia, were both initially misdiagnosed.
And this is consistent with the challenges in diagnosing Lewy Body Dementia – and differentiating it from other causes of dementia.
The public concern was so widespread that the Lewy Body Dementia Association’s website crashed, as their article below indicates. The article also contains some important information about Lewy Body Dementia, and a link to the Lewy Body Dementia Association’s website. You can also find a link on Caregiving With Purpose’s Resources Page under Associations.
LBDA Website Crashes as Public Responds to New Robin Williams Story
Atlanta—November 4, 2015—Yesterday, Susan Williams, Robin Williams’ widow, spoke on Good Morning America (GMA) and in other media, about it taking the past year for her to learn that Robin was suffering from Lewy body dementia (LBD), which she believes led him to take his own life. Susan Williams explained that the original Parkinson’s diagnosis did not cover all of his symptoms, and he was unaware of the LBD diagnosis when he died.
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, explained that “LBD is commonly mistaken for Parkinson’s or Alzheimer’s disease, or a psychiatric disorder because of overlapping features.” 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 www.lbda.org provides detailed information about differentiating LBD, Parkinson’s and Alzheimer’s symptoms; online and in-person support groups; research; treatment, and many 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. As recently as November 2, the LBDA reported that for the first time, an advocate for the Lewy body dementia (LBD) community, Angela Taylor, Director of Programs at LBDA, was named a member of the U.S. Department of Health & Human Services (HHS) Advisory Council on Alzheimer’s Research, Care and Services.
“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 Taylor. “We’re gaining traction,” added Koehler, “which can only serve to help more people get the correct early diagnoses and support.”
About the Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) 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. To learn more about LBD and LBDA, please visit www.lbda.org.
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Ina Gilmore, M.D.
Founder, www.CaregivingWithPurpose.com and www.TheKnittingYarn.com
Ambassador of Caregiving at www.HowToLiveOnPurpose.com