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Silenced by Dementia: What Happened to Casey Kasem

Casey Kasem

For nearly 40 years, his unmistakable voice could be heard counting down America's top songs of the week. For a younger audience, his voice was synonymous with "Shaggy" in the popular Scooby Doo cartoon series.

Casey Kasem, known by many as having one of the most recognizable voices in entertainment history, turned off his microphone for good in 2009. He successfully remained out of the public spotlight until recent months when a family dispute between Kasem's daughter, Kerri, and his wife, Jean, forced this American icon back on stage.

At the center of the family controversy was the long-term prognosis and care for Kasem, who suffered from dementia with lewy bodies (DLB). Kasem was diagnosed with this relatively unknown, but very common, condition in early 2014, which ironically left him unable to speak. Sadly, he lost his battle with the disease and passed away at a hospital in Washington State early Sunday morning.

As unfortunate as Kasem's story is, it has shed new and necessary light on DLB. For those who may not know about DLB, and there are a lot of you out there, here is some information to better understand the second most common form of dementia.

What Is Dementia with Lewy Bodies (DLB) and Why Is It Still So "Unknown?"

DLB is an umbrella term for two related diagnoses - dementia with Lewy Bodies and Parkinson's disease - and is a progressive dementia that leads to a decline in thinking, reasoning and independent function because of deposits that damage brain cells over time.

Interestingly, the disease affects approximately 1.3 million individuals and their families in the U.S. It is also important to keep in mind that there is no single test, or combination of tests, that can definitively diagnose DLB. In addition, because DLB symptoms can closely resemble other more known diseases like Alzheimer's and Parkinson's, it is widely underdiagnosed.

In fact, many doctors and other medical professionals still are not familiar with DLB - an interesting notion given that Dementia with Lewy Bodies is the second most common form of dementia behind Alzheimer's.

What are the Symptoms of Dementia with Lewy Bodies (DLB)?

Several symptoms are associated with DLB. According to the Alzheimer's Association they can include:

  • Changes in thinking and reasoning
  • Confusion and alertness that varies significantly from one time of day to another or from one day to the next
  • Parkinson's symptoms, such as a hunched posture, balance problems and rigid muscles
  • Visual hallucinations
  • Delusions
  • Trouble interpreting visual information
  • Acting out dreams, sometimes violently, a problem known as rapid eye movement (REM) sleep disorder
  • Malfunctions of the "automatic" (autonomic) nervous system
  • Memory loss that may be significant but less prominent than in Alzheimer's

What Treatment Options Are Available?

Unfortunately, there is no cure for dementia with lewy bodies. However, patients with DLB are treated with some of the same drugs as those used to treat Parkinson's and Alzheimer's, but clinical care is challenging. For example, the Lewy Body Dementia Association points out that some medications for Parkinsonian symptoms may increase the "confusion, delusions and hallucinations" commonly experienced by patients with DLB. For this reason, patients with LBD ideally should be managed by physicians trained in both movement disorders and cognitive neurology.

In the Mountain West, residents are fortunate to have University of Utah Health, which is home to only one of four clinics in the country designed specifically for patients experiencing DLB and Parkinson's dementia. The clinic was founded in 2013 and is committed to working with patients with DLB, and continually researching ways to better understand and treat this condition.