“The only tip I have is to keep your body and mind busy. Do some writing and reading every day. Write a story or start writing your memories. I finished mine and gave copies to my children and grandchildren.”
—HARLAN D., PWP
Back in 1912 a man named Frederick Lewy was examining the brains of people with Parkinson’s disease. During his examinations he discovered irregularities—tiny protein deposits (alpha-synuclein) found in deteriorating nerve cells—in the cells in the mid-brain region. These irregularities became known as Lewy bodies.77
Dementia with Lewy bodies is a type of dementia, specifically Lewy body dementia. It can get confusing as these names are sometimes used interchangeably, but technically Lewy body dementia (LBD) refers to either of two related diagnoses: dementia with Lewy bodies (DLB) or Parkinson’s disease dementia (PDD).
Dementia is a general decline in cognitive abilities (thinking, memory, language, etc.). There are many other types of dementia, with the most common and best-known being Alzheimer’s disease. Dementia with Lewy bodies is thought to be the third most common type of progressive dementia, behind Alzheimer’s and vascular dementia. It causes cognitive problems similar to those seen in Alzheimer’s and motor problems like those in Parkinson’s.
Because dementia with Lewy bodies is still relatively unknown but shares many commonalities with other well-publicized diseases, people may be initially misdiagnosed with Alzheimer’s or Parkinson’s. And on that note, though diagnosed with Parkinson’s disease a few months prior to his suicide in 2014, Robin Williams’s autopsy revealed he had an extreme case of Lewy body disease.78 (Dementia with Lewy bodies can sometimes be referred to as diffuse Lewy body disease, cortical Lewy body disease, and Lewy body variant of Alzheimer’s disease.)
Dementia with Lewy bodies is currently incurable, and it gets worse with time. Below are the symptoms.
• Problems with thinking (e.g., lack of judgment, loss of insight, decline in problem solving abilities)
• Motor problems like those in PD: difficulty walking, tremor, slowness of movement, stiffness
• Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions
• Visual hallucinations (usually occurring early on) and delusions
• Unsteadiness, fainting, and falls
• Visuospatial and depth perception problems
• Depression
• Sleep difficulties (may experience REM sleep disorder, which results in acting out dreams while asleep)
PDD is diagnosed when a person with PD has had motor symptoms for a year or more before they develop dementia symptoms. DLB is diagnosed when a person develops dementia symptoms within a year or even before they develop the motor symptoms of PD.