“The Most Common Disease You’ve Never Heard Of” — the Mystery of Lewy Body Dementia


A member of an area Parkinson’s Disease caregiver support group recently shared with me the link to a thought-provoking article in the Washington Post. “Morning Mix” featured a story on Lewy body dementia (LBD), a disease that is often associated with – and often misdiagnosed as –Parkinson’s Disease.

You can read the entire article at this link, but I do want to share some of the highlights from the article. We speak a great deal about Alzheimer’s Disease, but LBD is not uncommon and needs more light shed upon its signs and symptoms.

The article was sparked by the recent revelation that famed actor Robin Williams’ suicide was not due to depression, as had been previously speculated, but instead to the burden of the knowledge that he had developed LBD. According to his wife, Susan Williams, “Lewy body dementia killed Robin, it’s what took his life.”

Williams’ autopsy report included a finding of abnormal protein clumps in his brain, one of the most conclusive signs of LBD. Williams knew he had Parkinson’s Disease prior to his death, but recent symptoms – from delusions to anxiety attacks – left him feeling that he was losing his mind.

While not as well known, after that Alzheimer’s and vascular disease, Lewy body dementia is the third most common cause of dementia. It is estimated to affect over 1 million individuals in the U.S. today and up to 20% of individuals with dementia worldwide. As one researcher noted about LBD, “It’s the most common disease you’ve never heard of.”

Most people who develop the disease do not have a known family history, so the symptoms of the disease are often attributed to Alzheimer’s. But what are some of the warning signs of Lewy Body Dementia? Experts say that the disease often first manifest itself with sleep difficulties, including extremely vivid dreams. This symptom is then followed by delusions, hallucinations, and forgetfulness The disease is often associated with balance difficulties and dizziness. Over time, problem-solving ability disappears, and the individual often suffers depression and anxiety.

As with most other forms of dementia, there is no cure or effective treatment for Lewy body dementia. Individuals affected by LBD typically have a life expectancy of five to seven years after initial symptom onset, although the National Institutes of Health has found that the range can extend from two years to two decades.

Even with its marked symptoms, LBD is often misdiagnosed. For starters, the defining Lewy bodies or protein clumps are usually only discovered after death, when the brain can be directly examined. LBD is also often misdiagnosed as Parkinson’s disease. Lewy bodies are also the cause of the latter disease, but in the case of Parkinson’s, it affects motor skills primarily. It is particularly unfortunate that LBD ‘s misdiagnosis as Alzheimer’s or Parkinson’s can worsen the problem, as drug treatments for these two diseases can often worsen LBD symptoms.

Ironically, Robin Williams was slated to undergo neurocognitive testing later in the month in which he died. Only a week before his appointment, Robin hanged himself, unable to deal with what his wife called the “endless parade of symptoms.”

As awareness of Lewy body dementia increases in both the general public and the medical community, it is hoped that treatment efforts will advance and misunderstanding decrease.

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