Filming the inner turmoil of a frightening disease

By Barbara Peters Smith , Herald-Tribune
/ Friday, January 9, 2015

Everybody knows enough about Alzheimer's disease to be terrified of it.

But Lewy body dementia, the second most common form of progressive dementia, can sneak up on a family and be even more devastating — because it is so often misdiagnosed.

"It looks like Parkinson's and it looks a little bit like Alzheimer's and it's not," says JoAnn Westbrook, director of the Pines Education Institute of Southwest Florida. "It's complicated, because what researchers are saying is that they can't officially diagnose it until death, on autopsy. But people are becoming more aware of this disease, because families are reporting different behaviors."

[Actress and co-writer portrays a woman with Lewy body dementia in "Where Did You Go?" (Courtesy photo)]

Actress and co-writer Penelope Wildgoose portrays a woman with Lewy body dementia in "Where Did You Go?" (Courtesy photo)

One strikingly different behavior is that those with Lewy body dementia — Lewy bodies are protein deposits that lodge in nerve cells of the brain — can experience horrific hallucinations. They can shift from a normal conversation to an argument with someone who does not exist, or is no longer alive.

Because the institute teamed with national caregiving educator Teepa Snow to produce a training video on Lewy body dementia, Westbrook was contacted by a British director who is working on a film to raise awareness and create a "Living Well with Dementia" fund.

The 15-minute dramatic short — called "Where Did You Go?" — portrays the inner life of a woman experiencing the physical deterioration and psychological turmoil of Lewy body dementia. Even the brief trailer on the project's website is fairly harrowing.

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