The Common Dementia Condition You’ve Probably Never Heard Of

Martha T.S. Laham

When you think back on the life of the late Robin Williams, you may remember him as being a brilliant comic, versatile actor, and generous humanitarian. You probably wouldn’t think of Williams, who tragically died at the age of 63 from an apparent suicide, as a dementia sufferer. Williams was struggling with a neurological condition known as Lewy body dementia (LBD), also called dementia with Lewy bodies (DLB), according to a coroner’s report.

As we age, dementia can cast a dark shadow on our lives. The reality is that dementia will somehow touch us all: You’ve probably met someone with dementia or have a family member who may be a dementia sufferer. A loved one may start having difficulty with short-term memory, losing things, forgetting to pay bills, refusing to bathe, forgetting to eat, getting easily agitated or confused, or developing faulty perceptions, all of which are common signs of dementia.

First, let’s describe dementia, and then take a look at LBD.

What Is Dementia?

Dementia is not a specific disease. Rather, dementia is “the name for a group of symptoms caused by disorders that affect the brain,” says the National Institutes of Health (NIH). Various diseases, infections, strokes, head injuries, drugs, and nutritional deficiencies are frequently cited as primary causes of dementia.

About 47.5 million people worldwide are currently living with dementia. This figure is expected to double every 20 years, climbing to 74.7 million in 2030 and 131.5 million in 2050, according to an Alzheimer’s Disease International report. Startlingly, every four seconds a new case of dementia is diagnosed.

Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. Vascular dementia is commonly thought of as the second most frequent type of dementia, followed by LBD. As a degenerative disease, dementia in most of its forms is irreversible, although prescription drugs on the market can slow its progression or minimize its symptoms.

What Is Lewy Body Dementia?

As a general term, LBD can be divided into two related forms: Parkinson’s disease dementia and dementia with Lewy bodies. Whereas early symptoms of these two conditions differ, the fundamental brain changes are the same. “Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms,” says the Lewy Body Dementia Association (LBDA).

Lewy bodies are abnormal deposits or clumps of protein that develop inside neurons (nerve cells) in specific regions of the brain. When deposits build up, they damage and eventually destroy brain cells, which can lead to problems with thinking, movement, behavior, and mood.

How Is Lewy Body Dementia Diagnosed?

About 1.4 million Americans are afflicted with LBD, representing 10 to 25 percent of all dementia cases. Despite its prevalence, LBD is the most misdiagnosed dementia, often missed entirely.

As with other types of dementia, no conclusive laboratory test for LBD exists. Currently a clinical diagnosis of LBD is made chiefly through a full dementia evaluation. Only a brain autopsy can confirm a diagnosis of LBD.

Robin Williams’ autopsy report showed the presence of diffuse Lewy body disease. An ABC News article stated: “Robin Williams had a common but difficult to diagnose condition known as Lewy Body Dementia and this may have contributed to his decision to commit suicide last August [2014], according to documents included in his autopsy report.”

What Are the Symptoms of Lewy Body Dementia?

LBD is characterized by a progressive decline in a person’s mental abilities. Mayo Clinic provides a comprehensive list of signs and symptoms of LBD, including visual hallucinations; cognitive issues, such as problems with confusion, alertness, thinking, and memory; movement problems, such as slowed movement, tremors, a shuffling walk, or falls; and depression, anxiety, and apathy.

In an ABC News interview, Susan Williams, Robin Williams’ widow, spoke movingly about her husband’s struggle with the devastating symptoms of LBD. Susan also talked about the difficulty and slowness in getting an accurate diagnosis of the disease. “Lewy body dementia is what killed Robin,” she said in the interview. “It’s what took his life, and that’s what I spent the last year trying to get to the bottom of, what took my husband’s life.”

What Are the Risk Factors for Lewy Body Dementia?

Known risk factors for LBD are gender (male) and advanced age, while a potential risk factor is a family history of dementia.

Research studies provide fresh insights into risk factors for LBD. In one study, researchers found that the interaction between genes and environmental factors may increase susceptibility to developing Lewy body pathology. Also, a case-control study concluded that depression and low caffeine intake may increase a person’s risk of developing dementia with Lewy bodies, among other factors.

Why Is It Important to Learn About Lewy Body Dementia?

As we’ve discovered, LBD is a common neurological condition, often misunderstood and misdiagnosed. LBD can have a significant impact not only on people with LBD but also on family members and caregivers, who often shoulder the burden of caring for LBD sufferers.

In a People story titled “Robin Williams and the Brain Disorder That Drove Him to Suicide: What Is Lewy Body Dementia?” Dr. Alexander Y. Pantelyat, assistant professor of neurology and director of Atypical Parkinsonism Center at Johns Hopkins Medicine, remarks on the insidiousness of this illness:

“It affects your core, it affects who you are as a person. In the case of DLB and some of these other related disorders it tends to a great extent [to] affect the frontal lobe, which is really what makes us human. It’s really unbelievably devastating.”

You can learn more about Lewy body dementia by visiting the Lewy Body Dementia Association (LBDA), the National Institute on Aging (NIA), and the Alzheimer’s Association.

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The Common Dementia Condition You’ve Probably Never Heard Of

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