Robin Williams Death Raises Awareness of Lewy Body Dementia

It was recently reported that comedian-actor Robin Williams had dementia at the time of his death—but he was not suffering from Alzheimer’s disease. This is the first time many people had heard of Lewy body dementia, even though it is the second-most-common form of dementia. The Lewy Body Dementia Association shares this information on the disease:

There is a good chance your primary care physician is not familiar with the second-most-common type of progressive dementia in the elderly: Lewy body dementia (LBD). Despite the prevalence of LBD, people with the disease have to see an average of three doctors before the LBD diagnosis is made.

Lewy body dementia is a degenerative brain disease that has been described by LBD family caregivers as trying to manage Alzheimer’s, Parkinson’s and a psychiatric disorder rolled into one disease. Despite an estimated patient population of 1.4 million people in the U.S., LBD is most often misdiagnosed as Alzheimer’s disease or Parkinson’s disease. Early and accurate diagnosis of LBD is of critical importance, because people with LBD respond poorly to certain medications commonly prescribed for behavior and movement problems in people with Alzheimer’s or Parkinson’s, sometimes with dangerous or permanent side effects.

Recognition of LBD as a common form of dementia grew to prominence among neurologists only recently; general awareness of LBD as a disease has yet to make its way to primary care physicians. “Given the growing population of older Americans, at some point in your life LBD will likely affect someone you know,” said Angela Herron, president emeritus of LBDA’s board of directors. “The general public, including many primary care doctors and nurses, have never heard of LBD. So in addition to trying to manage a very difficult disease, LBD families find themselves in the unanticipated role of educator and advocate.”

LBD is typified by symptoms of dementia plus any combination of:

  • Unpredictable levels of cognitive abilities, attention and alertness.
  • Changes in movement or gait.
  • Visual hallucinations.
  • A sleep disorder that causes patients to act out their dreams physically.
  • Severe medication sensitivities.

The severe medication sensitivities in LBD make it a very difficult disease to treat without worsening already problematic LBD symptoms.

Quick Facts About LBD

LBD is more common in men than women.

People with LBD are more functionally impaired than people with Alzheimer’s disease with similar cognitive test scores.

There is a shorter disease course in LBD to both long-term care admission and death than in Alzheimer’s disease.

People with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s.

Source: Adapted by AgeWise from materials from The Lewy Body Dementia Association, a nonprofit organization dedicated to raising awareness of the Lewy body dementias and supporting people with LBD, their families and caregivers and promoting scientific advances. Visit to learn more about Lewy body dementia.