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The Tragic Story of Robin Williams and His Lewy Body Dementia

In August 2014, the world was shocked and saddened by the sudden loss of comedic genius Robin Williams. Initially attributed to suicide, it was later revealed that Williams had been battling a progressive neurological disorder known as Lewy body dementia (LBD). This devastating revelation shed light on the lesser-known aspects of his life and struggles. In this article, we delve into the story of Robin Williams’ battle with Lewy Body Dementia, exploring its symptoms, challenges, and the importance of raising awareness about this often misunderstood condition.

Table of Contents

    What Is Lewy Body Dementia?

    Lewy body dementia (LBD) is a brain disorder that can lead to problems with thinking, movement, behavior, and mood. It is characterized by the presence of abnormal clumps of a protein called alpha-synuclein, known as Lewy bodies, in areas of the brain involved in thinking, memory, and movement. These Lewy bodies accumulate inside neurons, or nerve cells, in the brain and cause them not to work well and eventually die. The exact cause of these changes in the brain is not yet fully understood.

    Symptoms of Lewy Body Dementia

    symptoms of lewy body dementia

    Lewy body dementia (LBD) is characterized by a range of symptoms that affect various aspects of a person’s life, including thinking, movement, sleep, and mood. The symptoms of LBD can vary in severity and may not always be present in the same individual.

    1. Thinking Skills

    Trouble making decisions, judging distances, paying attention, multitasking, planning, organizing, or remembering are common cognitive difficulties associated with LBD. Additionally, people with LBD may experience hallucinations, ideas that are illogical, unclear, or disorganized, poor judgment, confusion about time or where they are, and trouble with numbers or language.

    2. Movement

    Movement difficulties are another hallmark of LBD. These can include shuffling or slow walk, a frozen stance, balance problems or falling a lot, stiff muscles, tremors or shaking hands, stooped posture, loss of coordination, smaller handwriting than usual, trouble swallowing, and a weak voice.

    3. Sleep and Mood

    Sleep disturbances are common in LBD, including REM sleep behavior disorder (acting out dreams, including making violent movements during sleep or falling out of bed), sleeping a lot during the daytime, trouble falling or staying asleep, and the urge to move your legs when you’re at rest, called restless legs syndrome. Mood changes are also common, including depression or lack of interest, anxiety, delusions, such as believing a relative or friend is an imposter, agitation or irritability, restlessness, paranoia, such as a suspicion that people are out to get you, and unusual behaviors, such as pacing, hand-wringing, or repeating words or phrases.

    4. Other Symptoms

    Other symptoms of LBD include body temperature changes, dizziness or fainting, blood pressure problems, sensitivity to heat and cold, urinary incontinence (loss of bladder control), sexual dysfunction, constipation, and a weakened sense of smell. As LBD progresses, it can lead to complications such as aggressive behaviors, severe dementia, depression, falling or other injuries, and death.

    Misdiagnosis of LBD

    In the months leading up to his death, Williams experienced a range of symptoms that were initially misdiagnosed as Parkinson’s disease. He struggled with memory loss, difficulty with his lines, and increasing paranoia, which made it challenging for him to perform his work. His wife, Susan Schneider Williams, described his condition as “a terrorist inside his brain,” highlighting the devastating impact that LBD can have on a person’s mental and emotional well-being.

    The diagnosis of LBD was only made possible through an autopsy after Williams’ death. His case was particularly severe, with Lewy bodies found in almost every area of his brain. This underscores the difficulty in diagnosing LBD, as it can be easily misdiagnosed as other conditions like Alzheimer’s disease or Parkinson’s disease.

    The Difference of LBD with Parkinson’s

    the difference between lewy body dementia and parkinsons

    Lewy Body Dementia (LBD) and Parkinson’s disease (PD) are distinct conditions that share similarities. While both are forms of Parkinsonism, characterized by motor symptoms like tremors, stiffness, and balance issues, LBD is distinguished by the presence of Lewy bodies in the brain, which are not typically found in PD patients. LBD patients typically experience dementia symptoms first, followed by motor symptoms later, whereas PD patients often develop dementia later in the progression of the disease. The diagnosis of LBD and PD can be challenging due to similarities in symptoms, and treatment focuses on managing symptoms and improving quality of life, with no cure available for either condition.

    Life Expectancy of Someone Who Suffers from LBD

    life expectancy of someone with lewy body dementia

    Lewy Body Dementia (LBD) progresses as a neurodegenerative condition, yet it differs from terminal illnesses like late-stage cancer in its direct impact on mortality. While LBD doesn’t directly cause death, it poses significant challenges and can limit life expectancy. Compared to Alzheimer’s disease, LBD patients generally face a shorter lifespan. Prognosis for LBD ranges from fair to poor over time, with individuals succumbing to various complications such as immobility, falls, malnutrition, swallowing issues, or pneumonia. Though life expectancy varies, most diagnosed individuals typically survive for about 5 to 7 years.

    The Need for Increased Awareness

    Susan Williams has spoken extensively about her husband’s struggles with LBD, emphasizing the importance of early diagnosis and support for those affected by the disease. She has also highlighted the need for increased research into LBD, which is a relatively understudied condition compared to other forms of dementia.

    LBD not only affects the individual diagnosed but also has a profound impact on their families and caregivers. The condition can lead to significant emotional and financial burdens, making it essential to provide support and resources for those affected.


    The story of Robin Williams and Lewy Body Dementia serves as a powerful reminder of the importance of understanding and addressing this debilitating condition. It is crucial that we raise awareness about LBD and support research into the disease to improve diagnosis, treatment, and care for those affected.


    What were Robin Williams’ last words?

    Publicly, Robin Williams' wife shared that his last words to her were "Goodnight, my love... goodnight, goodnight."

    What actors have Lewy Body Dementia?

    There is no specific information about actors with Lewy Body Dementia. However, Robin Williams was diagnosed with Lewy Body Dementia before his death, which highlights the condition's impact on celebrities and the general public.

    Who has died from Lewy Body Dementia?

    Robin Williams, the renowned actor, was diagnosed with Lewy Body Dementia before his death. He is one of the most well-known individuals to have died from the condition.

    Who is the most famous person with dementia?

    Robin Williams is often mentioned as one of the most famous individuals with Lewy Body Dementia due to his high profile and public diagnosis before his death.

    What are the first signs of Lewy Body Dementia?

    The first signs of Lewy Body Dementia can vary from person to person, but common symptoms include:

    • Visual Hallucinations: Seeing things that are not there, which can be a frequent occurrence.
    • Movement Disorders: Symptoms similar to Parkinson's disease, such as slowed movement, rigid muscles, tremors, or a shuffling walk.
    • Cognitive Problems: Confusion, poor attention, visual-spatial problems, and memory loss, similar to those experienced in Alzheimer's disease.
    • Sleep Disturbances: Rapid eye movement (REM) sleep behavior disorder, which causes people to physically act out their dreams while asleep.
    • Mood Changes: Depression, apathy, and mood swings

    What causes Lewy Body Dementia?

    The exact cause of Lewy Body Dementia is unknown, but it is associated with the buildup of proteins called Lewy bodies in the brain. These Lewy bodies affect neurotransmitters, such as dopamine and acetylcholine, which are essential for various brain functions. Risk factors include age, family history, and certain diseases like Parkinson's disease and REM sleep behavior disorder.