Speaking out publicly for the first time since her husband’s death in 2014, Susan Schneider Williams, wife of actor Robin Williams, revealed that the coroner’s report revealed Robin had Lewy Body Dementia. Lewy Body Dementia is a fairly common form of dementia, affecting nearly 1.4 million Americans. However, it is much harder to diagnose, as symptoms mimic other diseases such as Parkinson’s.
Susan Schneider Williams said Robin suffered from a confusing array of symptoms beginning in 2013, ranging from severe anxiety to walking into doors. Susan told People Magazine that “It was not depression that killed Robin…depression was one of let’s call it 50 symptoms, and it was a small one.”
Lewy body dementia (LBD) is a degenerative brain disease that family caregivers say resembles Parkinson’s, Alzheimer’s, and a psychiatric disorder rolled into one. Because LBD symptoms closely resemble other more commonly known diseases such as Alzheimer’s (the most common form of dementia) and Parkinson’s, Lewy Body dementia is currently widely underdiagnosed. Many primary care physicians are not even familiar with the disease.
According to the Alzheimer’s Association, Dementia with Lewy bodies (DLB) is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function because of abnormal microscopic deposits that damage brain cells over time. Experts estimate that up to 25% of dementia patients suffer from this kind of dementia, however statistics are difficult to pin down because of the LBD’s overlap with other diseases. Symptoms of Dementia with Lewy Bodies include:
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Changes in thinking and reasoning
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Confusion and alertness that varies significantly from one time of day to another or from one day to the next
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Parkinson’s symptoms, such as a hunched posture, balance problems and rigid muscles
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Visual hallucinations
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Delusions
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Trouble interpreting visual information
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Acting out dreams, sometimes violently, a problem known as rapid eye movement (REM) sleep disorder
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Malfunctions of the “automatic” (autonomic) nervous system
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Memory loss that may be significant but less prominent than in Alzheimer’s
This form of dementia is particularly hard to treat, as patients are often more sensitive to the side effects of medication.
Ms. Williams said in an interview with ABC’s Good Morning America that “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.” She also revealed that Robin was within weeks of moving to an inpatient facility when he committed suicide.
While Williams’ widow hopes that this will shed new light on the disease, and help other families deal with the difficulties of caring for a loved one with dementia, science may still be a long way from that. The Lewy Body Dementia Association reports that on average it takes three doctors and over 18 months to accurately diagnose Dementia with Lewy Bodies. Its recognition as a common form of dementia has only become prominent to the neurological community within the past decade.
As an Elder Law attorney in the SF East Bay Area, the question that came to mind when I read this was: Could Robin Williams’ family have taken actions that prevented him from committing suicide? It’s hard to know, but is something to think about for families with a loved one that has been diagnosed with dementia or Parkinson’s. In many situations, a Conservatorship of the person may be necessary. A Conservatorship of the Person is obtained through the court, and allows a family member or close friend to make health care decisions on behalf of another individual, if that person has lost mental capacity and does not have a valid Power of Attorney. However, when an individual is in the early stages of dementia, conservatorships can be more difficult to obtain, either because doctors are not able to conclusively agree on a diagnosis, or more commonly – because the person outright refuses to obtain a medical opinion.
In the case of Robin Williams, one will never know if his suicide could have been prevented had more legal and medical steps been taken to help him. Because he was diagnosed with Parkinson’s and had not been experiencing symptoms for an extensive period of time prior to his death, it most likely could not have been prevented.
The care of family and friends with Alzheimer’s or other forms of dementia is no doubt extremely challenging. If you know someone in this situation, encourage them to reach out to other families, openly communicate with doctors and others about what’s going on, and if needed – consult with an Elder Law attorney in the county of the loved one with dementia to see if there are any legal steps that can be taken to help.