For Steph Fish, the difficulties began when she was in high school. Her mom started showing symptoms of young onset Alzheimer's at 48 years old.
"My dad always said, you know, 'I wish it was me,' " Fish said. " 'Out of the two of us, she doesn't deserve this one bit.' "
Fish's entire college career was plagued with questions about her mom's health. She said she couldn't talk to anybody about it — nobody really understood the disease in the late 2000s.
"I had never met anyone else that was going through it," Fish said.
It took four years to get a diagnosis.
"[My mom] was always smiling. She had the most infectious laugh," Fish said. "I always say, you know, Alzheimer's took everything from my mom except for her laugh."
Eventually, Fish found her way to people who did understand. The Young Champions are young professionals, mostly in their 20s and 30s, who are committed to building community and awareness around Alzheimer's and related forms of dementia through the Alzheimer's Association, Minnesota-North Dakota Chapter. The group of about 100 members hosts fundraising events (now virtually) and addresses lawmakers to advocate on behalf of their loved ones and bring the diseases into the conversation.
They've all been impacted by Alzheimer's as caregivers, grandchildren — even pallbearers. Their Facebook page has more than 1,200 followers.
"Not only was it just a great group to be a part of and fundraise for and help advocate for, but it became a huge support group, as well," Fish said.
Her mom died from the disease at 59.
Alan Branch recently moved to the Twin Cities for work and connected with Young Champions. His grandmother died of dementia in March, but he said he wants to remember the happy times with her. African Americans like Branch are twice as likely as people who are white to develop Alzheimer's.
The group, he said, is a way to connect with people here and get involved with a cause he cares about. He has especially enjoyed decorating senior homes around the holidays.
"If I'm going to volunteer, I'd obviously love to do it for a cause that I support," Branch said. "I can help give that kind of love or appreciation to someone else's grandma."
About 200,000 Americans under the age of 65 are estimated to have Alzheimer's of more than 5.8 million total Americans with the disease. Alzheimer's is the sixth leading cause of death in the United States, with about one in three seniors dying from some form of dementia.
Six years ago, Fish started the Young Champions' signature annual event, ALZ Bean Bagz for Brainz. The bean bag tournament has raised $100,000 for the Alzheimer's Association, the parent organization of the Young Champions (alz.org/mnnd).
"There's so much misdiagnosis and under diagnosis. And a lot of that is just because we are constantly learning more and more about this disease," said James Sorbel, congressional ambassador with the Alzheimer's Association and a Young Champ.
Sorbel lobbies lawmakers for dementia funding and research. He got involved with the group after his grandfather was diagnosed with Alzheimer's; many of his other relatives struggled with different forms of dementia, he added.
"Alzheimer's is just such a terrible thing," Sorbel said. "We spend our lifetimes creating these memories, and Alzheimer's robs us of those memories."
Yet, fewer than half of seniors discuss memory and cognition with their doctors, according to the Alzheimer's Association, and only about one-fourth have received an assessment for cognition.
Sorbel said that for years the country has paid significantly more for dementia care than for research. Until recent advocacy work and high-profile news, Sorbel said lawmakers were skeptical of the vast impact dementia has on families.
"It wasn't that long ago where we would have meetings with senators, congresspeople, staff, where they just didn't really believe that Alzheimer's was that big of a deal," Sorbel said.
"Now when we go into these meetings, it's a priority for so many members of Congress."
More than 16 million family members and friends provided nearly 19 billion hours of unpaid care to their loved ones with Alzheimer's last year, according to the Alzheimer's Association.
Lawmakers have also come to realize the financial burden of Alzheimer's, Sorbel said. The direct cost of Alzheimer's is estimated at $305 billion nationwide, according to the organization.
"Research and scientists will follow funding," Sorbel said. "It is the most expensive disease in America."
Mackenzie Kelley helped start the Young Champions in 2010 and acted as co-president for nearly eight years. She established the Alzheimer's Association's Memory Mixer — "the party to end Alzheimer's" — in honor of her mom, who died of the disease in 2012.
The event brought people together for a decade. They amassed 450 people at their final gathering last year and have raised $315,000 since its inception. "I feel like with Alzheimer's, it's such a helpless disease," Kelley said.
While there is no treatment or prevention, the Young Champions helped her feel less alone through those trials.
"All of a sudden, you know, we had this group dedicated to raising awareness or fundraising or advocating," Kelley said. "And that gave us a huge sense of purpose because we were actively doing something in the fight to end Alzheimer's."
J.D. Duggan is a Twin Cities freelance writer.
