mental health explainer

What is Lewy Body Dementia, the disease that killed Robin Williams?

Lewy bodies were found in Williams’ brain only during his autopsy, his wife has revealed.

“Terrorist inside my husband’s brain.” That is how Susan Schneider Williams, wife of the late actor Robin Williams, described Lewy Body Dementia, which she says devastated her husband’s life in his final days. Like many people suffering from the disease, Williams’ was wrongly diagnosed. Only the postmortem after his suicide in 2014 revealed diffuse Lewy Body Dementia in almost his entire brain and brain stem.

Lewy Body Dementia is the second most common form of dementia, and accounts for about 20% of dementia cases around the world. In India, an estimated 3.7 million people suffer from dementia, of which approximately 5% or 185,000 people have Lewy Body Dementia, according to a report by the Alzheimer’s and Related Disorders Society of India.

Lewy bodies are deposits of the protein called alpha-synuclein inside brain cells. Alpha-synuclein is normally abundantly present in the brain, especially at the ends of neurons, in a soluble form. When the protein aggregates as insoluble fibrils in brain cells it gives rise to pathological conditions like Lewy Body Dementia and Parkinson’s. Lewy bodies are named after Dr Frierich Lewy, a German scientist, who first identified the protein deposits in the brain in 1912.

Psychiatric presentation

Not unlike Alzheimer’s disease, people with Lewy body disease experience problems with memory and judgement. People with Lewy’s disease could also have symptoms associated with Parkinson’s such as muscle stiffness and problems walking.

But, it is “decades behind Alzheimers or Parkinson’s disease as far as the scientific advances and understanding of the disease,” Angela Taylor told Time Magazine. Taylor is director of programs at the Lewy Body Dementia Association in the United States, a non-profit that works on creating awareness about the disease.

A few months before his death, Williams’ was diagnosed with Parkinson’s disease. Williams too, had a tremor in his left hand.

Like Alzheimer’s disease and Parkinson’s disease, Lewy Body Dementia is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There is no known cure to the illness, or to stem the progression of the disease.

What differentiates Lewy Body Dementia from the two other forms of dementia are the psychiatric presentations in the patients who experience extreme swings between alertness and confusion or drowsiness, which may happen unexpectedly and change from hour to hour or day to day.

What is more debilitating, are the hallucinations – seeing or hearing things that are not real.

Williams’ had a panic attack, when he was in the middle of filming Night at the Museum 3. He was recommended an antipsychotic medication, which makes symptoms worse for people with Lewy Body Dementia.

Williams’ case, his wife wrote, was extreme. “Not until the coroner’s report, 3 months after his death, would I learn that it was diffuse LBD that took him. All 4 of the doctors I met with afterwards and who had reviewed his records indicated his was one of the worst pathologies they had seen. He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem.”

Diagnosis tough

If doctors missed Lewy Body Dementia in a highly paid and much loved Hollywood actors, it is an indication of how hard the disease is to diagnose. Like for most other diseases the challenge of diagnosis holds doubly true in India.

“Diagnosing dementia itself is a tough,” said Dr Sirish Hastak, a consultant neurologist from Kokilaben Dhirubai Ambani Hospital in Mumbai. “We see far fewer cases of Lewy Body Disease as compared to Parkinson’s disease.”

Dementia patients are often referred to psychiatrists who are not equipped to handle a pathological problem like Lewy Body Disease, said Dr Hastak. Once diagnosed, the treatments for the disease, which normally consists of medication with chemical inhibitors, are considered more effective as compared to Alzheimers’ and Parkinson’s disease.

We welcome your comments at
Sponsored Content BY 

When did we start parenting our parents?

As our parents grow older, our ‘adulting’ skills are tested like never before.

From answering every homework question to killing every monster under the bed, from soothing every wound with care to crushing anxiety by just the sound of their voice - parents understandably seemed like invincible, know-it-all superheroes all our childhood. It’s no wonder then that reality hits all of a sudden, the first time a parent falls and suffers a slip disc, or wears a thick pair of spectacles to read a restaurant menu - our parents are growing old, and older. It’s a slow process as our parents turn from superheroes to...human.

And just as slow to evolve are the dynamics of our relationship with them. Once upon a time, a peck on the cheek was a frequent ritual. As were handmade birthday cards every year from the artistically inclined, or declaring parents as ‘My Hero’ in school essays. Every parent-child duo could boast of an affectionate ritual - movie nights, cooking Sundays, reading favourite books together etc. The changed dynamic is indeed the most visible in the way we express our affection.

The affection is now expressed in more mature, more subtle ways - ways that mimics that of our own parents’ a lot. When did we start parenting our parents? Was it the first time we offered to foot the electricity bill, or drove them to the doctor, or dragged them along on a much-needed morning walk? Little did we know those innocent acts were but a start of a gradual role reversal.

In adulthood, children’s affection for their parents takes on a sense of responsibility. It includes everything from teaching them how to use smartphones effectively and contributing to family finances to tracking doctor’s appointments and ensuring medicine compliance. Worry and concern, though evidence of love, tend to largely replace old-fashioned patterns of affection between parents and children as the latter grow up.

It’s something that can be easily rectified, though. Start at the simplest - the old-fashioned peck on the cheek. When was the last time you gave your mom or dad a peck on the cheek like a spontaneous five-year-old - for no reason at all? Young parents can take their own children’s behaviour available as inspiration.

As young parents come to understand the responsibilities associated with caring for their parents, they also come to realise that they wouldn’t want their children to go through the same challenges. Creating a safe and secure environment for your family can help you strike a balance between the loving child in you and the caring, responsible adult that you are. A good life insurance plan can help families deal with unforeseen health crises by providing protection against financial loss. Having assurance of a measure of financial security for family can help ease financial tensions considerably, leaving you to focus on being a caring, affectionate child. Moreover,you can eliminate some of the worry for your children when they grow up – as the video below shows.


To learn more about life insurance plans available for your family, see here.

This article was produced by the Scroll marketing team on behalf of SBI Life and not by the Scroll editorial team.