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One family’s lessons from learning to cope with Alzheimer’s

In this clip, from the documentary “The Genius of Marian,” Pam and Ed are with her doctor who is checking in on the disease’s progress. Filmmaker Banker White is the couple’s son: “I love that moment,” he said. “It reminds me that despite everything she’s going through she remains emotionally sensitive, emotionally intelligent.”

Every 67 seconds someone in the United States develops Alzheimer’s. Two-thirds of those people are women. Pam White is one of them, so was her mother. To documentary filmmaker Banker White though, Pam is not just another Alzheimer’s patient, she is his mother. White began filming his mother as a way to help her finish the book she was writing about her own mother, an accomplished artist. When he watched the scenes later he was struck by another story he could tell.

“When I watched the footage, I was wrecked by it,” White said. “When I was sitting in the room with my mom I didn’t hear it the same way as I did watching it back. It was really powerful. She was incredibly eloquent as she handled the stigma of her disease. I was just so moved.”

So he began to piece together his mother’s story as she struggled with accepting her Alzheimer’s diagnosis and began to lose the ability to accomplish simple tasks. It came together as the Point of View documentary “The Genius of Marian.”

“I captured the period of time when someone is still living relatively independently, but are beginning to accept the disease,” White said. “That is a critical period change, of self-awareness, everyone around her is caring for her. As a family you are making decisions on behalf of someone you have never had to make a decision for before.”

White’s stake in this documentary was higher than average though and walking the line between son and filmmaker was not always easy.

“I was always walking this line as a family member, a patient observer, and a filmmaker who was removed in order to create an honest picture,” he said.

The story isn’t just his mother’s; it’s his father’s as well. “The Genius of Marian” follows Ed White’s transition from husband to caregiver. The burden of caregiving, especially initially after an Alzheimer’s diagnosis, falls heavily on the immediate family. In 2013 15.5 million caregivers provided an estimate 17.7 billion hours of unpaid care.

Ed White’s story touched a lot of people who watched the documentary. The response has launched another project called “The Genius of Caring” (http://geniusofcaring.com/), a web-based story sharing project where caregivers and families can share their stories of those living with Alzheimer’s.

“Everyone experiences dementia and Alzheimer’s differently and everyone cares for people with the diseases differently,” the filmmaker said. “It’s so hard to talk about. They’re going through the most terrifying thing in the world, losing their identity. As a community and as a nation I don’t think we’ve really figured out how to cope with that in particular.”

“The Genius of Marian” shows how one family tries to start that conversation about how loved ones can cope while adjusting to life with Alzheimer’s. The documentary is streaming online for free until Oct. 9.

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