Lewy body dementia is one of the most common types of dementia, affecting approximately 1.4 million Americans.
But many people still do not know much about the disease or its symptoms.
Now that might change after CNN founder and media giant Ted Turner recently told “CBS Sunday Morning” about his diagnosis of Lewy body dementia.
While more than a million people have the disease, getting the right diagnosis can be difficult.
Actor Robin Williams was diagnosed with the disease posthumously.
The symptoms of Lewy body dementia overlap with Alzheimer’s disease and Parkinson’s disease, which makes it difficult to diagnose correctly. Symptoms like hallucinations may also be misdiagnosed as other psychiatric disorders such as schizophrenia.
Complicating diagnosis, Lewy body dementia can occur alongside other brain disorders, including Alzheimer’s disease.
The disease gets its name from abnormal deposits in the brain known as Lewy bodies. These are made of a protein called alpha-synuclein which affects chemicals in the brain, causing problems with thinking, behavior, mood, and movement.
Lewy body dementia is an umbrella term for two related diagnoses — dementia with Lewy bodies and Parkinson’s disease dementia.
Both are caused by the buildup of Lewy bodies in the brain. These can only be seen after death during an autopsy.
Dr. Irene Litvan, a professor of neurosciences and director of the UC San Diego Health Movement Disorders Center, said there is disagreement among some doctors about whether dementia with Lewy bodies is part of the “spectrum of Parkinson’s disease” or if it is a separate disorder.
In dementia with Lewy bodies, people first show signs of a decline in thinking ability.
This can look like Alzheimer’s disease, but early on, people are more likely to have trouble with executive functioning than with memory. Executive tasks include abilities such as planning, multitasking, sequencing, and conceptualizing thoughts.
The main features that distinguish dementia with Lewy bodies from other conditions are:
The fluctuations are “very typical of this disease,” said Litvan. “Sometimes a person can act almost normal, but other times they look like they are completely confused.”
Robin Williams’ family only learned that he had a severe case of the disease after his death by suicide in 2014.
In an editorial published in 2016 in the journal Neurology, Robin Williams’ wife Susan Schneider Williams wrote, “I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion.”
In contrast, Parkinson’s disease dementia starts as a movement disorder (parkinsonism), with later dementia and changes in mood and behavior.
“Dementia occurs five [times more] in Parkinson’s disease than in the general population,” said Litvan, “but it is usually a late event.”
However, not everyone with Parkinson’s disease develops dementia.
Litvan added that the distinction between when one of these diagnoses ends and the other begins is somewhat “arbitrary.”