What is Forgetting to Remember: An Alzheimer’s Story, and how did it come to be?
Forgetting to Remember: An Alzheimer’s Story chronicles the life of Luke and his family as they navigate living with early-onset (or young-onset) Alzheimer’s disease. Produced by The New Road Productions, a 501(c)3 nonprofit, and directed by me, Brent Roberts, Luke’s documentary captures his journey with a bit of levity, some of which is seen on his social media accounts as he participates in dancing TikTok trends, playful banter around his disease, and even a “Suck it Alz” party. Luke also takes the audience’s hand, walking you through the dark valley of losing his mom and sister, forgetting his kids’ names, and fighting to escape the grip of death by dementia.
Now entering post production, Luke’s documentary sprang from a desire to have a time capsule to leave behind for his family, and evolved into something much larger than all of us. This film will increase awareness for young-onset Alzheimer’s disease through Luke’s entertaining persona and invite people to be authentic in the reality of it all.
I joined this project through mutual friends. Once I met the irresistible Luke, my heart was so moved by his story that I was compelled to tell it. As a filmmaker, I aim to tell stories that have a mission, and Luke’s story fits in perfectly with the stories I want to craft. I love a good twist and looking at things through a different lens so the audience says, “Oh, I never thought about it that way.” And I want to help raise the voice of stories that need more attention.
The film invites action to participate in the Alzheimer’s Association and other organizations doing amazing things for this cause. And this story will stir hearts and minds concerning death with dignity for those dying in the grips of dementia.
What initially inspired you to grapple with dementia?
In the process of all this, I discovered how rare I was to have little to no proximity to dementia until I met Luke. Nearly every person I have come into contact with has someone they know and love who has been affected by this disease. (In the United States, the Alzheimer’s Association estimates 7.2 million people are living with Alzheimer’s disease and related dementias.)
I was around Luke’s age when this story found me, and I could not fathom losing my memories, mental capabilities, and so many of the things that dementia takes. Placing myself in Luke’s shoes: I’m too young. I treasure my memories—I currently have over 105,000 pictures and videos on my phone. They are comprised of the beautiful moments and people in my life that I hold dear.
I am broken by what this disease takes. I want to make a difference in how it is seen, how we fight it, and the great big MORE that all of us can do in the fight.
How has working on dementia-related art changed you?
It has really made me treasure every day—even the bad ones. Making a scripted film is a daunting task, but keeping up with the ever-changing dynamic of a documentary subject with Alzheimer’s is a whole different level of “go with the flow.”
I have grown a deep appreciation of the caregiver’s journey and, in general, the humanity in how we treat one another, never knowing what is happening behind the scenes in someone’s life.
We see ourselves in the stories of others. And so many caregivers know this journey better than anyone. I hope Luke’s documentary will uplift them and draw more attention to what they go through so that more resources and relief can be brought into their lives, too.
How has Forgetting to Remember been received?
The documentary is currently in post production, and updates to our progress can be tracked on the website. Comments on our social media posts are full of gratitude for the way Luke is living through this, bringing hope and a refreshing dose of joy. We’ve had several news stations share our story from San Diego to Vegas, and even an Emmy-nominated segment in Iowa. People know this story will change lives.
This is harrowing, and there is no denying that.
But when we all feel the freedom to laugh together, it allows us to cry together knowing we are not alone.
And as we tell our stories with painstaking authenticity, people find the strength to share their
stories with the same refreshing honesty.
This work is dedicated to: During our production, Luke walked through losing his older sister to this battle. And their mother passed away from this disease in her 50s also. While Luke’s story is dedicated to them, it is also dedicated to the millions walking through this similar valley and to the future generations who may be able to find a cure and better treatments.
Find more from Luke and Forgetting to Remember on its website, Facebook, Instagram, and Tiktok.
