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Filmmakers, Memory Specialists Turn Story Into Science to Better Understand Alzheimer’s

They found almost all patients, families experience stigma and isolation in the health care system

En español | After chronicling the experiences of Alzheimer’s patients in seven cities across the country, documentary filmmaker Zach Jordan says that despite everyone’s unique journey, he found almost all encounter stigma related to the disease and experience no clear path through the health care system.

“We only visited seven American cities, but the diversity and depth of each story we collected is profound,” says Jordan, who is working on the project with fellow filmmaker Peter Schankowitz. “While each story is unique and personal, the larger issues that every American city faces are the same: In 2019, aging and Alzheimer’s remain difficult issues to tackle because of stigma.”

The venture, sponsored by AARP and called “My Alzheimer’s Story Project,” plans to take these stories and use them as an aid for research at the Penn Memory Center in Philadelphia. The findings will be used to better understand patients and direct individual care.

“You walk into a doctor’s office, you get the diagnosis of Alzheimer’s, but then you are pretty much sent on your way. You have to come up with your own path and you have to create your own journey,” says Jordan, 42, who previously documented his father’s experience with Alzheimer’s. “You have to answer your own myriad of questions and challenges that you’re facing. So, part of the issue related to care is this lack of road map for everyone.”

Katharine Halpin, 60, sat beside her partner, Bonnie Meyer, 79, when Meyer first was diagnosed with mild cognitive impairment. She says her participation in My Alzheimer’s Story Project allowed them to celebrate living with the disease.

“For us, we both have so much more joy and excitement for life,” Halpin says. “Bonnie is no longer reserved but instead extends herself to children in the grocery store, strangers at parties and, of course, our friends. She has much stronger opinions and shares them freely now.”

The two have been together for 37 years, “before it was chic to be gay,” Halpin says.

Documenting vulnerable moments on video teaches the nuances of Alzheimer’s and brain health, Jordan says.  

Moving forward, the filmmakers and Jason Karlawish, M.D., and Jason Moore of the memory center will work together to make sense of the almost 80 interviews from a scientific perspective.

“Nobody has ever done anything like this before, so it’ll be very interesting to see how it pans out,” Jordan says.

Paula Wright, 55, shared the story of her father, Willie Wright Jr., 78, a Vietnam veteran who served in the Air Force and was diagnosed four years ago. She says her participation was “important to share with others that they aren’t alone in this journey and to emphasize how important it is to prepare for caregiving.”

Sharing who her father was before dementia also was important to her.

“Being invited to share my caregiving journey as part of My Alzheimer’s Project was a great honor. I know that my story is just one of 50 million worldwide,” says Wright, who is associate state director of community outreach at AARP Arizona.

“The past two years have been very challenging for my family. ... My mother is his primary caregiver, and I‘m an only child,” Wright says. “Due to the stress of caregiving, my mother also began experiencing some significant health issues. I couldn’t have seen this coming in a million years.”

Through her own work related in music and brain health, she concluded that “the research is clear — music, rhythm, vibrations and drumming have a very positive impact on brain health.”

Although Jordan is no longer on the road, people can connect with his team to share their stories or provide support via the MyAlzheimers website, or @MyAlzheimers on Twitter, Instagram and particularly Facebook, where live broadcasts are archived. Their hashtag is #MyAlzRoadtrip.

“People are full of resilience and hope,” he says. “Whether we were speaking with a woman watching her husband slowly die or with the father who is taking care of his 38-year-old son who has Alzheimer’s, the strength of the human condition prevails.”