SPARK: The Look of Lewy Body Dementia

“You don’t look like you have dementia.” That statement haunts Dona Denham, a forty-eight year old woman who has been diagnosed with Lewy body dementia (LBD). What does dementia look like?, she ponders. To Dona, for whom it took three doctors 18 months to diagnose her symptoms: “it’s a whole complicated web of everything.” Unfortunately, actor Robin Williams, the subject of the documentary “SPARK: Robin Williams and His Battle with Lewy Body Dementia,” was not diagnosed until after his death by suicide in 2014.

A screening of “SPARK” was recently hosted on Zoom by Insight Memory Care Center, in collaboration with AARP Virginia. “SPARK” offers a detailed examination of LBD, including its biology, symptoms and impacts, with the primary emphasis on Williams and his wife, Susan Schneider Williams.

Astonishingly, as revealed in “SPARK,” 1.4 million people nationwide are living with LBD. Among all dementia cases, LBD accounts for 10-25% of cases, second only to Alzheimer’s. Although testing is available now to diagnose LBD, at the time of Williams’s death, an autopsy of the patient’s brain was the only effective way to diagnose this type of dementia.

Scientists now know that LBD is a fatal disease in which abnormal protein deposits, called Lewy bodies, slowly take over the brain. The deposits start in the brain stem and, ultimately, take over the neurons functioning in the brain, causing them to die. To be diagnosed with LBD, there must be enough cognitive decline to impair daily activities, accompanied by at least two of the following four symptoms: Parkinsonism (slowness, stiffness and shakiness), visual hallucinations, acting out dreams while asleep, and changes in the level of alertness or arousal (“zoning out”).

Receiving an accurate diagnosis is challenging. Before receiving a diagnosis of LBD, 66% of cases required at least three physicians; 50% of diagnoses took 12-18 months; and 78% of patients had been diagnosed with another ailment first. Given these diagnostic challenges, the Lewy Body Dementia Association is dedicated to raising awareness of LBD and promoting scientific advances. Per the Association, “though many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists.”

While LBD is currently incurable, treatment focuses on preserving strengths rather than what has been lost or changed. Many symptoms can be managed or reduced with medications, physical therapy, occupational therapy, speech therapy, social work and counseling. Documentaries like “SPARK” can be instrumental in helping patients and their support system understand the complexities of LBD, and in the words of Williams two years before his death, “help people be less afraid.”