Good afternoon. Welcome to Demystifying Alzheimer’s. I’m your hostess Mary Yamin-Garone.

Today’s topic is Lewy Body Dementia.

In the summer of 2014, actor and comedian Robin Williams committed suicide. In a touching letter printed in the American Academy of Neurology journal, his widow, Susan Schneider Williams, wrote, “As you may know, my husband Robin Williams, had the little-known but deadly Lewy body disease (LBD). He died from suicide in 2014 at the end of an intense, confusing, and relatively swift persecution at the hand of this disease’s symptoms and pathology. He was not alone in his traumatic experience with this neurologic disease.

I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life. Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it back. Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist or was this a combo pack of disease raining down on him?”

Lewy Body disease isn’t rare. An estimated 1.4 million individuals and their families in the United States are affected by it. Because Lewy Body symptoms can closely resemble diseases, such as Alzheimer’s and Parkinson’s, it’s widely underdiagnosed. Many in the medical profession still aren’t familiar with it.

Lewy Body refers to Parkinson’s disease dementia and dementia with Lewy bodies. Early symptoms of these diseases while different, still reflect the same underlying biological changes in the brain. Over time, someone with both diagnoses will develop comparable cognitive, physical, sleep and behavioral symptoms.

Who was Lewy?

In the early 1900s, while researching Parkinson’s disease, Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinson’s-like symptoms. These abnormal proteins are dispersed throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, which disrupts perception, thinking and behavior. Lewy body dementia exists on its own or in conjunction with other brain changes, including those typically seen in Alzheimer’s and Parkinson’s disease.


Everyone with Lewy Body disease is different and will demonstrate different degrees of the following symptoms. These symptoms may fluctuate moment-to-moment, hour-to-hour or day-to-day. Some individuals won’t show any signs of certain features, especially during the early stages of the disease.

It’s important to note that dementia is a process whereby the individual becomes progressively confused. The earliest signs are problems with memory, changes in their speaking, such as forgetting words, and personality problems. Cognitive symptoms include poor problem solving, difficulty with learning new skills and impaired decision-making.

Other causes of dementia, such as alcoholism, overuse of medication, thyroid or metabolic problems, should be ruled out first. Strokes also can cause dementia. If these reasons are eliminated, the individual is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer’s as the most common form.

The latest clinical diagnostic criteria for dementia with Lewy bodies categorizes symptoms into three types.

Central feature

  • Progressive dementia with deficits in attention and executive function are typical. Prominent memory impairment may not be evident in the early stages.

Core features

  • Fluctuations in cognition that are noticeable to those close to the individual with LBD. At times, they may be alert then suddenly have acute episodes of confusion that might last hours or days. This fluctuation isn’t related to the “sundowning” of Alzheimer’s.
  • Hallucinations are usually, but not always, visual. Often they’re more pronounced when the individual is most confused. They’re not necessarily frightening to the person.
  • Parkinson’s disease symptoms take the form of changes in gait. Individuals may shuffle or walk stiffly. They also may fall frequently. Body stiffness in the arms or legs or tremors also may occur. The Parkinson’s mask (a blank and emotionless look), stooped posture, drooling and runny nose may be present, too.

Suggestive features

  • REM Sleep Behavior Disorder (RBD) is often found in those with Lewy Body Dementia. During periods of REM sleep, they will move, gesture and/or Confusion may be more pronounced between the dream and waking reality when the individual wakes up. RBD may be the earliest symptom of Lewy Body in some sufferers and is now considered to be a significant risk factor for developing LBD.
  • Sensitivity to anti-psychotic drugs is another significant symptom that may surface.

Cognitive symptoms

  • Cholinesterase inhibitors are considered to be the standard treatment for cognitive symptoms in LBD. These medications were developed to treat Alzheimer’s. However, some researchers believe individuals with LBD may be more responsive to these types of medications than those with AD.

Movement Symptoms

  • These symptoms can be treated with a Parkinson’s medication called levodopa. If the symptoms are mild, however, it may be best not to treat them to avoid potential side effects from the medication.

Additional symptoms

  • Difficulties with depth perception, object orientation, direction and illusions.
  • Autonomic dysfunction, including fluctuating blood pressure, heart rate variability (HRV), sexual disturbances, impotence, constipation, urinary problems, excessive or decreased sweating, reduced tolerance for heat, fainting, dry eyes/mouth and difficulty swallowing that may lead to aspirated pneumonia.
  • Delusions, aggression and depression. The onset of aggression in LBD may be the result of infections, like a UTI, medications, misinterpretating the environment or personal interactions and the natural progression of the disease.

That’s all for today. Thanks for listening. I hope this information was helpful.

Join me next time when I’ll talk more about Lewy Body Dementia.

You can read Susan Schneider Williams’ letter in its entirety at

About Lillian Cauldwell

Own and operate an Internet Talk Radio Network for 10 years, 2005 to Present Published Author of Non-Fiction Book, 1996, "Teenagers! A Bewildered Parent's Guide. Published Author of several fiction books, 2006 "Sacred Honor" and 20010 "The Anna Mae Mysteries: The Golden Treasure." Playwright of Theater of the Absurd and Black Comedies. Screenwriter, Black Comedies