For gerontologist and dementia expert Ishan Williams, an associate professor of nursing, Alzheimer’s disease is more than a complex neuro-biological process: it’s a human calamity.
And it’s up to scientists to help these patients and their caregivers not to forget the “humanity piece of it.”
"It brings more people into the conversation and makes the unknown not unknown anymore."Prof. Ishan Williams, one of several scientist-scholars behind the forthcoming film
That’s why Williams and two fellow scientists—Jack Van Horn, a professor of psychology and data science and an expert in brain imaging, and George Bloom, a professor of biology and an expert in neuroscience—teamed up on a 3Cavaliers grant with a cohort of animation-savvy UVA students, including computer science and drama major Karen Zipor, to make a brief animated film to demystify the disease that’s as bewildering as it is captivating.
The result—the 15-minute “Animating Alzheimer’s Disease”—will be released at a community event this coming fall and will reveal in appealing, graphical ways, how the disease's neuro-biological processes unfold.
“People impacted by Alzheimer’s are really fascinated by it, but often don’t know how to have conversations about it, and what questions to ask to understand it,” explained Williams, who develops and deploys interventions that support patients with dementia and their caregivers. “This film will show in simple pictures what changes are taking place in the brain, and, through a caregiver’s voice, what living with and around the disease can be like.”
The film—created with the same software used by major film studios like Pixar—breaks down dementia’s highly technical processes through graphical storytelling to show what happens when, for example, beta amyloids poison tau proteins, neurons are stymied by plaque-clogged synapses, and dementia progresses from the hippocampus, where short-term memories live, outward.
The film will also convey dementia’s impact on caregivers, who see it up close. Williams’ long-time collaborator Wendy Cooper—a Charlottesville businesswoman and pastor who has cared for her 89-year-old mother Lottie, who was diagnosed with Alzheimer’s more than a decade ago—is the film’s undisputed star, a role that Van Horn called “more animated than the animations.”
"I'm constantly counting the costs, not just in dollars but in time, disruption, and our ability to provide her the care she needs."Wendy Cooper, Charlottesville businesswoman, pastor, and chief caregiver to mother Lottie, 89, who has Alzheimer's
“Her voice is critical,” he said.
For Cooper, who has faced repeated challenges and difficult decisions over her mother's decade-long battle with the disease, it’s an opportunity to highlight dementia’s very real, very personal impact on caregivers, whose roles are often downplayed and unseen. Such caregivers often face debilitating grief, anxiety, and uncertainty, and are often pressed financially by the disease, which can leave its victims wholly dependent on others.
“I'm constantly counting the costs,” said Cooper to Williams at a recent meeting, “not just in dollars but in time, disruption, and the ability to provide the care she needs.”
Clinical uses for the film are many: running on loop in clinic waiting rooms, being shown at community forums on dementia and at Alzheimer’s support group meetings, and by clinicians to newly diagnosed patients and their loved ones to offer a sense of what’s to come. Williams hopes to develop a complement of short films that delve into other facets of dementia—caregiver depression, how respite programs work, and Alzheimer’s genetic and environmental risk factors—as a way to connect caregivers, who “rarely get asked to tell their stories” to “get more conversations going.”
Learning has been multi-directional. For Zipor, a psychology minor, the project made her consider caregivers’ journeys, while Van Horn appreciated the chance to practice “distilling leading-edge research down to its essence.”
“We scientists need to do a better job of explaining why our work is sensible, and how it makes people’s lives better,“ he said. “In this age of misinformation, that’s vital.”
And that’s exactly the point, said Williams. “It brings more people into the conversation and makes the unknown not unknown anymore.”