Susan Schneider Williams, the widow of late comic and actor Robin Williams, once called Lewy body dementia “the terrorist inside my husband’s brain.”
While it afflicts more than one million Americans, according to the National Institute of Neurological Disorders and Stroke, it is regularly overshadowed by Alzheimer’s disease and Parkinson’s, often leading to misdiagnoses in patients with Lewy body dementia.
Media magnate Ted Turner, who announced his diagnosis in 2018, was mistakenly diagnosed with bipolar disorder, while Williams was misdiagnosed with Parkinson’s disease.
In the wake of Williams’ death in 2014 and “Robin’s Wish,” the documentary about Williams’ last years, awareness of the disorder has spiked in recent years. Baseball legend Tom Seaver, who died Wednesday, also suffered from Lewy body dementia.
It’s a complicated, often misunderstood neurological disorder, requiring years of work with a neurologist to even get diagnosed. Here are some common questions about LBD, answered.
What is Lewy body dementia, and what causes it?
Lewy body dementia is a type of progressive dementia. According to Norma Loeb, the founder of the Lewy Body Dementia Resource Center, it is the second most common form of progressive dementia behind Alzheimer’s.
Excess deposits of the protein alpha-synuclein, known as Lewy bodies, clump up inside neurons, causing damage to certain parts of the brain and, as a result, a decline in cognition and movement.
There are two forms of Lewy body dementia: Dementia with Lewy bodies (DLB) and Parkinson’s disease dementia. The early warning signs of both are key: DLB takes place when people develop cognitive issues, including memory loss, while patients with Parkinson’s disease dementia initially develop movement issues such as muscle stiffness, gait and tremors.
Over time, their symptoms will become more and more similar. Other symptoms of LBD include depression, anxiety, sleep disorders, insomnia, and hallucinations. Patients often develop hallucinations of people or small animals, Loeb said.
Individuals with LBD may live anywhere between two to 20 years from diagnosis to death, according to the National Institute of Neurological Disorders and Stroke.