Robin Williams' Secret Battle with Lewy Body Dementia

What is Lewy body dementia?

Lewy body dementia is a progressive neurological disease characterized by an abnormal buildup of proteins called Lewy bodies in the brain cells involved in memory, thinking, behavior, and movement. This protein buildup is also associated with Parkinson’s disease. Individuals who suffer from Lewy body dementia (LBD) have tangles or plaques in their brains, which are also seen in people with Alzheimer’s disease.

There are certain individuals who are at the increased risk of developing this medical condition. They include:

• Individuals above 60 years old
• Being male 
• People who have a family member who is diagnosed with Lewy body dementia (LBD) or Parkison's disease (PD)

Research studies have also revealed that individuals who are depressed may have an increased risk of developing LBD.

Symptoms

Below are the signs and symptoms of Lewy Body dementia:

• Movement Disorders: Lewy body dementia may also show symptoms of Parkinson's disease such as rigid muscles, tremors, slow body movements, and small shuffling steps.

• Depression: Those suffering from LBD may also experience depression or other types of mental illness.

• Sleep Disorders: Certain individuals with LBD may experience rapid eye movement (REM) sleep behavior disorder, which enables them to physically and sometimes violently act out their dreams while they are asleep.

• Visual Hallucinations: Hallucinations are often the first few symptoms that occur in individuals suffering from LBD. These hallucinations tend to recur and would include seeing animals, people, and shapes that are not actually present. Hallucinations associated with sound, touch, and smell may also be experienced. 

• Apathy: Individuals suffering from this type of dementia may eventually lose motivation in all aspects of life.

• Cognitive Problems: Individuals with LBD may also experience cognitive issues similar to Alzheimer's disease such as visual-spatial disabilities, confusion, loss of memory, and lack of focus or concentration.

• Lack of Proper Regulation of Body Functions: Certain body processes are affected by LBD. They include blood pressure, digestive processes, sweating, and pulse, which are regulated by the autonomic nervous system (ANS). When an individual's ANS is affected by LBD, symptoms such as dizziness, bowel issues, and sudden fainting can occur.

Diagnosis

To diagnose Lewy body dementia, there must be a progressive cognitive decline in an individual. Apart from this symptom, two out of the following symptoms must also exist:

• Symptoms similar to Parkinson’s disease
• Fluctuating and unpredictable alertness along with an impaired cognitive function
• Rapid eye movement (REM) sleep behavior disorder
• Recurrence of visual hallucinations

Apart from the core symptoms of LBD, there are also tests for certain biomarkers, which can further support the diagnosis of the medical condition. Biomarkers are substances present in the blood that can normally indicate if there are existing diseases such as Lewy body dementia. Currently, there are no biomarkers that can provide an accurate diagnosis of Lewy body dementia, but a few biomarkers can provide support in the diagnosis.

However, biomarkers alone and without LBD symptoms would not be enough for a definitive diagnosis. The biomarker tests that support an LBD diagnosis include:

• Sleep studies that can help examine brain activity
• Nuclear imaging tests (single-photon emission computerized tomography or SPECT and positron emission tomography test or PET)
• Iodine-MIBG myocardial scintigraphy 

The doctor can also diagnose LBD based on the presence of one of the core symptoms mentioned above and one or more of the following biomarkers:

• Anosmia (total loss or impaired sense of smell)
• Autonomic neuropathy or autonomic dysfunction, which usually involves unstable blood pressure and heart rate, lack of proper body temperature regulation, excessive sweating, and other related symptoms
• Excessive sleepiness during the day

There are various combinations of symptoms, biomarkers, and features, which can help doctors in diagnosing Lewy body dementia. Doctors may also rule out the presence of other conditions that may show the same signs and symptoms to support the diagnosis of LBD. The following examinations would include:

• Blood Tests: Carrying out blood tests would rule out the possibility of any kind of physical problems that can affect the functioning of the brain such as a deficiency of vitamin B12 or the case of an underactive thyroid gland leading to hypothyroidism.

• Physical and Neurological Tests: In this particular test, doctors would look out for signs of Parkinson’s disease such as tremors, stroke, tumors, or other medical issues, which can affect a person's physical and brain functioning. Neurological examinations may test an individual's ability to walk and balance, reflexes, sense of touch, eye movements, strength test, and muscle tone.

• Brain Scans: Doctors may ask for an MRI, CT scan, or PET scan to help identify the possibility of a stroke or internal bleeding. These tests are also helpful in ruling out the possibility of tumors in the brain. Most of the time, dementia is identified in people based on their medical history and physical examination. However,  imaging studies are also helpful in suggesting other types of dementia such as Alzheimer’s disease or Lewy body dementia.

• Sleep Evaluation - Sleep studies can also be done to check if an individual has a REM sleep behavior disorder.

• Autonomic Function Test - To check if a person has an unstable heart rate and blood pressure.

Treatment

There is no known cure for Lewy body dementia. Treatment is focused more on the patient's symptoms, which can be challenging to treat. Various medications can be prescribed by doctors for the treatment of individual symptoms.

• Medications for Parkinson’s Disease - To reduce symptoms such as rigid muscles, tremors, or slow movement.

• Cholinesterase Inhibitors - These are Alzheimer’s disease medications, which can help increase the level of chemical messengers in the brain that are vital for judgment, thought, and memory.

Apart from medications, certain therapies can also be used to avoid worsening the condition due to drug side effects. Nondrug approaches may include:

• Reducing noise and clutter in the surroundings to make it easier for people with dementia to function properly.
• Breaking tasks into smaller and easier steps and focusing mostly on success instead of failure.
• For caregivers: Offer validation and reassurance to the person struggling with the disease. Avoid harsh corrections and develop soothe responses instead.

Robin Williams' Battle with LBD

Robin Williams died on August 11, 2014, at the age of 63. He was regarded as one of the best and finest actors in Hollywood.

Many people believed that Robin Williams took his own life after his long battle with depression. However, after his death, his wife Susan Schneider Williams had mentioned in one interview that Lewy body dementia actually caused Robin to commit suicide. She told People magazine, "Depression was one of let's call it 50 symptoms and it was a small one."

Lewy body dementia is considered as the second most common neurodegenerative type of dementia after Alzheimer’s disease. It is often one of the most misdiagnosed medical conditions. As mentioned earlier, it is known to occur when protein deposits called as Lewy bodies develop in the nerve cells present in the brain regions that regulate memory, thinking, and motor control or movement. This protein buildup then leads to a progressive decline in a person's mental abilities. It causes fluctuations in the mental status of the affected individual causing impairment of motor functions and visual hallucinations.

It has been said that Lewy body dementia started taking a toll on Robin William’s life in the year leading up to his death. It caused him to experience heightened levels of anxiety, impaired movements, and delusions. According to his wife Susan, one of his anxiety attacks led to a miscalculation with a door, which ultimately left Robin with a head bloodied and rigid muscles. However, doctors were not still able to exactly pinpoint on what was wrong with Robin since most of his symptoms were parallel to those with Parkinson’s and Alzheimer’s disease. For this reason, Robin Williams did not have the correct medications and proper understanding to battle it out.

Few months prior to his death, Robin Williams experienced heightened paranoia, wherein he would always stay confused that he could not even remember his lines when he was filming a movie. The doctors had later identified Robin's condition as an unusual rare case of Lewy body dementia. Susan said that Robin was losing his mind and he was well aware of it, but could not do much about it.

There are about 1.2 million people in America who suffer from this progressive brain disorder. Robin Williams was earlier diagnosed with Parkinson’s disease just a few months prior to his death, but Lewy body dementia was only discovered after an autopsy was carried out. Robin Williams had undergone a series of tests and scans to understand what was wrong with him. He also tried various types of medications, physical therapies, and alternative remedies such as yoga and self-hypnosis. He also worked out with a trainer, but nothing seemed to work for him.

According to his wife Susan, the initial symptoms started during their wedding anniversary celebration, which was just ten months prior to his death. At that time, Robin suddenly felt a gut discomfort, which made him anxious and fearful. From then on, other issues had escalated. In the spring of 2014, Robin Williams actually struggled to film one of his movies called Night at the Museum 3. He would get panic attacks and would find it difficult to remember one line of his script. However, three years earlier, he would remember hundreds of lines without issues while performing on Broadway.

Susan recalled that Robin was coherent with and clear reasoning one minute, and then completely lost and confused five minutes later.

Susan has joined a non-profit organization called American Brain Foundation in the hope of helping other people and healthcare professionals become more aware of this neurological disease.