Did Lewy Body Dementia Play a Role In Robin Williams’ Death?

When Robin Williams died in 2014, the cause was widely reported to be suicide related to depression and a recent Parkinson disease diagnosis. Now, Williams’ wife says that isn’t quite the case. Rather, Susan Williams says her husband’s death is tied to a poorly understood brain disorder known as Lewy body dementia (LBD).

Robin_Williams_2011a_(2)Robin Williams was diagnosed with Parkinson’s disease in November 2013 due to the resting tremor in his left hand. The condition affects approximately 1 million people in the United States and most people with Parkinson’s eventually develop mild cognitive impairment similar to what Williams’ was reportedly experiencing.

The misdiagnosis of Robin Williams isn’t particularly surprising. In fact, the majority of cases of Lewy body dementia are initially misdiagnosed as Parkinson’s or Alzheimer’s and only discovered to be LBD in post-mortem autopsies.

Lewy body dementia is highly difficult to diagnose. In many cases the condition can be clinically identical to Alzheimer’s, and shares key symptoms with Parkinson’s such as resting tremor and stiffness. It is widely believed Parkinson’s and Lewy body dementia are related and sit on a spectrum, but the links between the diseases are not well understood.

Ultimately, little is properly understood about LBD, despite the condition being the second-leading cause of dementia in Americans behind Alzheimer’s disease.

The Lewy bodies which characterize the disease are actually bundles of proteins called alpha-synuclein and can only be found in brain autopsies. The bundles of proteins were reportedly first discovered by German neurologist Friedrich Lewy in 1923, but in the time since then we have yet to even discern whether the proteins are causing the disorder or are markers left from the brain’s attempts to repair itself.

There are only two key symptoms that can help in identifying LBD in living individuals. REM sleep behavior disorder, a disorder causing individuals to physically act out their dreams and potentially injuring themselves, and the early onset of visuomotor impairments resulting in incoordination are the sole unique signifiers of Lewy body dementia before death.

Williams reportedly had begun experiencing visuomotor problems in the time before his death. Susan Williams described an incident to ABC News where the performer was standing over a sink with a bloody wound on his head. According to his wife, the performer said he had “miscalculated” where the door was.

For Robin Williams to have been diagnosed, his clinician would have needed to found significant problems in some combination with attention, decision-making, spatial reasoning, and memory. This can occasionally be detected with a short test given in a clinic. From there, he would have needed to have undergone more complex testing by a neuropsychologist for cognitive performance, visual hallucinations, and other factors.

The problem is these tests still miss up to 60% of all patients with Lewy body dementia.

Even if Williams had been correctly diagnosed, there is little that could be done. There are currently no treatments for the disease and medications to treat related symptoms can complicate matters further.

Many individuals with LBD are prescribed numerous medications to manage the myriad of symptoms of LBD, including anti-anxiety drugs, antidepressants, and even antipsychotics to manage hallucinations. While these medications can be important in managing symptoms, they can also have dangerous side-effects.

Compounding matters even further, Lewy body dementia and depression are also closely tied. Williams reportedly experienced severe depression which may have been related to LBD and could have played a pivotal role in his death.

Ultimately, Williams’ death will always be known as a tragic case of suicide, but the context provided by the diagnosis of Lewy body dementia in his autopsy paint a truly devastating picture. Susan Williams is speaking out to help ensure others don’t have to experience similar fates. From here, she hopes to use the attention on her husband’s death to raise awareness and money to research new ways to better treat and diagnose Lewy body dementia.

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