JOE DIGITAL, INC.
Documentary filmmakers Zach Jordan and Peter Schankowitz embarked on a cross-country road trip earlier this month to document the stories of Alzheimer’s patients, their families and caregivers.
Their venture, sponsored by AARP and called “My Alzheimer’s Road Trip,” goes from Los Angeles to Philadelphia and will include stops in eight U.S. cities, where they will hear from those affected by the brain disease. Jordan, 42, has a vision: a video library of Alzheimer’s stories. “People will have this giant resource in front of them that they can tap into, and the more stories that we collect, the more powerful this library becomes,” Jordan says.
The new endeavor follows the filmmakers’ documentary, Carpe Kilimanjaro: An Alzheimer’s Story, which captured Jordan experiencing his own father’s death in 2012 from Alzheimer’s — and his family’s reaction to the disease.
“The first step for us was to be able to tell my story. ... Once that foundation was laid, then we could really get to work on doing the most fulfilling part of this; interviewing all these different types of people, sitting down with them, and giving them a voice,” says Jordan.
“There is a stigma attached to Alzheimer’s and brain health in general because the idea you are cognitively impaired strips away your very being. That can be a very touchy topic for families to talk about,” he says.
The filmmakers made connection with AARP’s Global Council on Brain Health (GCBH), a repository of information on maintaining cognitive health. A member of GCBH’s governance committee, geriatric physician Jason Karlawish of the University of Pennsylvania, will help find applications for their work.
“The project was born out of the relationship with Penn Memory Center in taking the project to the next level — which was not only using the library of human wisdom to help families and to get rid of the stigma, but also to service the work being done by Penn Research,” says Jordan. “Think of [the] story as the missing link of data.”
Karlawish’s very first question to families is to describe a typical day for the patient. This lays the foundation for their own story, critical to understanding their life and directing their individual care.
“Telling a story goes hand-in-hand with the research that is being done and we’re looking at preventative medicine in a new light,” he says. “For us it’s very exciting to go into the next part of the project in capturing all of these stories and making sure that it’s done in lockstep with all of the scientific work and research happening.”
The filmmakers also hope that brain health will be a topic that is talked about by the next presidential candidates. They hope depicting the individual journeys in cities across America will give diverse voices and perspectives to the disease.
“It’s really important for us, especially for the caregiver and patient stories,” says Jordan, “to give them a platform to be able to show that the family experience in Austin and Phoenix is very different than the family experiences that are happening in Johnson City, Tenn., or Louisville, Ky.”
Follow the project by going to their MyAlzheimers website, and @MyAlzheimers on Twitter, Instagram and particularly Facebook, where live broadcasts will be held from every city. Their hashtag is #MyAlzRoadtrip.