Robin Williams and Susan SchneiderAlthough depression was initially given as the cause of actor Robin Williams’ suicide in 2014, his widow says autopsy results lay the blame on Lewy body dementia, a fairly common but hard-to-diagnose form of dementia.

Susan Schneider Williams said that starting in 2013, her husband suffered from a confusing parade of mysterious symptoms, ranging from crippling anxiety to walking into a door. “I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it,” she told People magazine. “Because we didn’t know. He didn’t know.”

Lewy body dementia (LBD) is a degenerative brain disease that family caregivers describe as like trying to manage Alzheimer’s, Parkinson’s and a psychiatric disorder rolled into one disease.  It affects an estimated 1.4 million individuals and their families in the United States, but because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s (the most common type of progressive dementia) and Parkinson’s, it is currently widely underdiagnosed and there is a good chance your primary care physician is not familiar with it.

LBD symptoms include dementia plus any combination of: unpredictable levels of cognitive abilities, attention and alertness, changes in movement or gait, visual hallucinations, a sleep disorder where people physically act out their dreams, and severe medication sensitivities. The severe medication sensitivities in LBD make it a very difficult disease to treat without worsening already problematic LBD symptoms.

Ms. Williams said in an interview with ABC’s Good Morning America that since fall 2013 Mr. Williams had had “this endless parade of symptoms” and that “not all of them would raise their head at once.” The symptoms included crippling anxiety attacks, muscle rigidity, and bloodying his head after running into a door.  

“It was like playing Whac–a-Mole. Which symptom is it this month? I thought, ‘Is my husband a hypochondriac?’ We’re chasing it and there’s no answers.”  Robin Williams’ autopsy revealed the true cause.  Ms. Williams also revealed that her husband was only weeks away from moving into an inpatient treatment facility when he took his own life.

Despite the disease’s prevalence, it takes an average of three doctors and more than 18 months to correctly diagnose LBD, according to the Lewy Body Dementia Association.  Recognition of LBD as a common form of dementia grew to prominence among neurologists only within the past decade. Early and accurate diagnosis of LBD is of critical importance because people with LBD respond more poorly to certain medications for behavior and movement than people with Alzheimer’s or Parkinson’s, sometimes with dangerous or permanent side effects.  At the same time, people with LBD may respond more favorably to certain dementia medications than people with Alzheimer’s, although there is no cure for LBD as yet.

To learn more about LBD visit the Lewy Body Dementia Association’s website at www.lbda.org. The Association notes that its website recently crashed due to the “overwhelming traffic” following the Good Morning America segment.

For an overview of the various forms of dementia, click here