Lewy Body Dementia: What Signs to Watch For

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The Americans who grew up watching “Mork and Mindy” might be surprised to learn that it has been nearly a decade since comedian Robin Williams was found unresponsive, hanging in his Marin County, California, home. 

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The direct cause of death was the belt around his neck, but the Oscar winner was also struggling with his diagnosed Lewy body dementia.

Williams’s widow Susan told People magazine 14 months after his death the LBD was the real culprit: 

“I’ve spent this last year trying to find out what killed Robin. To understand what we were fighting, what we were in the trenches fighting, and one of the doctors said, ‘Robin was very aware that he was losing his mind and there was nothing he could do about it,’” she says.

“This was a very unique case, and I pray to God that it will shed some light on Lewy bodies for the millions of people and their loved ones who are suffering with it,” adds Susan. “Because we didn’t know. He didn’t know.”

According to the National Institute on Aging, LBD is one of the most common forms of dementia, and it is a physical condition brought on by chemical changes in the brain:

Lewy body dementia is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain, whose changes can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.

Williams might be the most famous figure afflicted with LBD, but it also took down two-time Democratic presidential nominee Illinois Gov. Adlai Stevenson III and two members of the 1986 American League champion Red Sox, Bill Buckner and Tom Seaver. 

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Watch for These Seven LBD Symptoms

According to the Rochester, Minnesota, based Mayo Clinic, the onset of LBD brings varying alertness and thinking function, repeated visual hallucinations, and Parkinsonian symptoms.

Lewy body dementia also causes a disruption of rapid eye movement sleep so that the individual acts out their dreams as they are sleeping.

Mayo said there are seven specific symptoms: visual hallucinations, movement disorders, poor regulation of body functions, cognitive problems, trouble with sleep, varying attention, depression, and apathy.

“Lewy body dementia is progressive. This means it gradually gets worse over time. As symptoms get worse,” according to the clinic.

The disease eventually leads to severe dementia, aggressive behavior, an increased risk of falling, and worsening Parkinsonian symptoms, such as tremors, according to the clinic. On average, LBD patients live seven to eight years after their diagnosis.

According to the Lewy Body Dementia Association, the hallucinations can affect all five senses. 

“Hallucinations and illusions are typically visual in nature for people with Lewy body dementia, but they can also manifest as disturbances to smell, taste, or touch, or hearing things that are not there,” according to the LBDA. 

The LBDA said the examples of the hallucinations include seeing a person or animal in an empty room, hearing conversations when no one is around, or mistaking patterns on a rug for snakes.

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LBD v. Parkinson’s Disease

Lewy body dementia is often confused with Parkinson’s Disease because both affect muscle movements and mental faculties, but there are critical differences that follow the chicken-and-egg conundrum.

Individuals stricken with Parkinson’s first struggle with muscle movement and control, balance and stiffness, which eventually affect the brain. 

Individuals stricken with LBD first have challenges with mental capacity, such as problems with memory, thinking, confusion, and even hallucinations.

Neither condition can be cured beyond medications that can mitigate the symptoms and bring comfort to the patient.

In fact, Mr. and Mrs. Robin Williams were convinced the actor had Parkinson’s rather than its less well-known cousin.

LBD-Related Inappropriate Sexual Behavior

Individuals with Lewy body dementia, like those diagnosed with other neurological diseases, may exhibit sexual disinhibition or Inappropriate Sexual Behavior.

In the paper “Treatment and Management of Sexual Disinhibition in Elderly Patients With Neurocognitive Disorders,” posted Oct. 13, 2021, by Cureus, the authors describe the five manifestations of ISB: 

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This behavior can be broken down into five domains: inability to inhibit, oversharing, inappropriate comments, inappropriate exposure, and overly flirtatious [5]. Three commonly cited types of sexually inappropriate behavior include 1) sexual language that is different from the patient’s premorbid personality; 2) implied sexual acts including reading pornographic material or requesting genital care in the absence of need; and 3) overt sexual acts including groping, grabbing, public masturbating or exposing oneself to caretakers or family members.

According to the LBDA, another function of the changes in behavior is the onset of delusions, which are strongly held beliefs that cannot be proven. 

These delusions can include believing a dead loved one is still alive or that a friend or loved one has been replaced by an imposter.

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