For gerontologist and dementia expert Ishan Williams, Alzheimer’s disease is more than a complex neuro-biological process: it’s a human calamity.

"It brings more people into the conversation and makes the unknown not unknown anymore."

Associate Professor Ishan Williams, among the creators of a new short film "Animating Alzheimer's Disease"

And it’s up to scientists to help these patients and their caregivers not to forget the “humanity piece of it.”

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 May.

“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.

130 million

Though 47 million people currently have dementia, including Alzheimer's, that number will more than triple by 2050

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.”

"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, are often pressed financially by the disease, which can leave its victims wholly dependent on others. 

“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. 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.”

Associate Professor Ishan Williams, who researches, develops, and deploys interventions to support caregivers

"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, shown at community forums on dementia, 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.”

To receive an invitation to the "Animating Alzheimer's Disease" community event this May, at which Associate Professor Ishan Williams will speak, please email the School's Alumni and Development Office: nursing-alumni@virginia.edu.