Humans of Dementia
Partners: HFC, AARP, Generations United, Memorywell, National Scholastic Press Association, UsAgainst Alzheimer’s
A family issue that has an intergenerational impact, Alzheimer’s disease and other dementias (ADRD) often affect the financial security, emotional states, and physical well-being of everyone involved. The Humans of Dementia writing contest was conceived collaboratively by our cohort of organizations in order to bring light to Alzheimer’s by activating the next generation of advocates and allies. Through storytelling, these young writers give voice and heart to ADOD’s staggering statistics.
One of the most feared diseases associated with late-life, the effects of Alzheimer’s and other dementias are catastrophic and impact the loved ones of the approximately 5.7 million patients in the U.S. This number is projected to almost triple (16 million) by 2050. Through creative writing, the Humans of Dementia contestants give shape to this data and offer glimpses into the daily impact of dementia.
Employing the poetic device of simile, high school winner Amaya Turner makes the reality of millions with dementia more palpable. Using a marble as the symbol for her friend’s memory, she poignantly describes his experience and the diligence caregiving requires, “His memories are like marbles rattling in a bowl, clicking against one another. Once polished to perfection, they’re now old and foggy. Sometimes he can pick up the marbles, the memories, and examine them. Other times they fall to the floor and shatter against the tile. That’s okay. We help him pick them up, mend them as best we can.”.
Humans of Dementia reflects the importance of engaging youth like Amaya now, at a time when caregivers are becoming younger and the responsibilities of care are being shared intergenerationally. In 2010, the average age of a caregiver was 53; by 2018, it was 47, with one in four family caregivers being millennials. The teens and young adults in this contest are part of an intergenerational care continuum. They are valued participants in lighting the way forward by reducing shame and increasing awareness around ADRD.
When writing about her grandmother, third-place high school winner Maya Benjamin does just this, unpacking her own difficult emotions and raising awareness about the psychological toll of no longer being recognized by a loved one, “I’m selfish to wish that somewhere in her 101-year-old brain, my face would remain of importance. I’m selfish to wish that my name would cause her heart to warm. I’m selfish to wish that, with such an incredible life to look back on, she would remember me. She doesn’t need to remember me. I can remember her.”
For our inaugural contest, we were thrilled to receive approximately 100 entries from across the U.S. and Canada. The 2021 contest will be announced soon, and our goal is to double the number of young people who share their stories. Students can sign up now to receive first notice when the contest is launched next year: https://wearehfc.org/humansofdementia.
In the meantime, we encourage you to share your loved one’s story on MemoryWell, a free, web-based platform designed to build bonds and empathy, start conversations, and preserve history. HFC’s Story Wall is another space created for Alzheimer’s family members to share their memories and experiences. “Sharing our personal stories isn’t easy, but it reminds that we are not alone. So let’s talk about it. Let’s share our stories: the good, the bad, and the ugly,” shares HFC Co-Founder, Lauren Miller Rogen.
Our organizations understand there is still much to do in the fight against Alzheimer’s and other dementias. Today someone in the United States develops Alzheimer’s every 65 seconds. By 2050 this is projected to be every 33 seconds. With 200,000 people under age 65 having early-onset Alzheimer’s, it is also no longer a disease associated with aging. By changing the conversation through collaborative projects like Humans of Dementia we hope to bring light to ADOD one story at a time. We are so grateful to the people who shared their stories with us in 2020 and offer our congratulations to the six winners and four Honorable Mention entrants of this year’s contest:
High School Category: Amaya Turner, Abington, MA; Rashi Ranjan, San Jose, CA; Maya Benjamin, Cambridge, MA; Jasiah Washington, Kennesaw, GA; Amber McComb, Saint James, NY.
College Category: Katie Allred, San Marcos, TX; Richelle Matarazzo, Roswell, GA; Madeline Corradi, Toronto, CA; Hank Montgomery, Wilmington, NC; Natalie Sinak, St. Louis, MO.
