Misdiagnosis and Lewy Body Dementia

September 8, 2014
age dementia symptoms

Correct diagnosis is crucial.

Lewy body dementia is the second most common form of dementia in the United States, but it is the most often misdiagnosed of all forms of dementia.

According to an August 7, 2014 press release from the Lewy Body Dementia Association (LBDA), there are approximately 1.3 million people in the United States who are affected by Lewy body dementia. Among forms of dementia, the condition is second only to Alzheimer’s disease in the number of people it affects. However, getting that all-important diagnosis is very often a struggle. The LBDA states that it takes more than 18 months and three doctors, on average, before a patient is correctly identified as having Lewy body dementia.

What does this mean?

Frequently, those with Lewy body dementia present symptoms that may be misidentified as symptoms of Alzheimer’s or another medical condition. Receiving a correct diagnosis is important because different forms of dementia require different treatments. When a patient is misdiagnosed for 18 months (or longer), he or she is not receiving much-needed correct treatment for that period of time. By the time such a person finally receives a diagnosis, what may have started out as a mild case may very likely have progressed to a moderate or severe state.


Receiving appropriate treatment for Lewy body dementia requires the involvement of a medical professional with the appropriate experience. That means a person who has knowledge of – and preferably direct experience in treating – Lewy body dementia itself, not just other forms of dementia.

One of the challenges is that Lewy body dementia has symptoms that may remind a practitioner of Alzheimer’s or Parkinson’s disease, but many medications used in the treatment of these disorders are not appropriate for Lewy body dementia sufferers; in fact, some of these medications can have serious side effects when used with Lewy body patients. These side effects can range from making symptoms much worse to potentially causing a fatal reaction.

More information about these medications is available from the LBDA.

Writer, Craig Butler

Craig Butler has been writing on a wide range of topics for more than fifteen years. As the National Communications Director for the Cooley's Anemia Foundation, Craig regularly writes on a range of health and medical topics. Among the many projects he has written for the Foundation is the Cooley's Anemia Storybook, a collection of original short stories for children with the blood disorder Cooley's Anemia. His freelance work has ranged from reviewing moves and CDs to creating entertainment-related stories about baldness, to creating text for comic strips. Craig looks forward to having a dialogue with you about senior care and issues of concern.

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