Nothing About Us Without Us: Life, Advocacy, and Dementia Dementia Action Alliance Panel
I have felt called not to speak for others, but to listen, to learn, and to help share the voices that too often go unheard. I want to amplify the voices of those who have lived the experience, who remind us that life doesn’t end with a diagnosis.
Through willGather, I’ve been privileged to meet extraordinary people—care partners, advocates, and those living with dementia—who are actively shaping what it means to live with dementia. Their voices, their wisdom, and their experiences matter. I’m drawn to the work of the Dementia Action Alliance (DAA). Their guiding principle, "Nothing About Us Without Us," isn’t just a phrase—it’s a movement. It’s about listening, about real advocacy, and about making sure that every person living with dementia has a seat at the table.
Too often, a diagnosis is handed down like a sentence, with little guidance beyond, "Go home and prepare for the worst." But that’s not the full story. There is another way. A way that prioritizes dignity, advocacy, and community.
Today, I’m honored to sit down with a panel of extraordinary individuals who are not only living with dementia but are reshaping the future of how we understand it and who refuse to let their diagnosis define them. Laurie Scherrer, Jack George, Monica Downer, and Tim Perkins each bring a unique perspective—facing the shock of diagnosis, the roller coaster of emotions, and the daily realities of life with dementia. Beyond each of their challenges, they’ve found resilience, purpose, and community. From advocacy work to artistic expression, from research participation to daily problem-solving, their journeys reveal the power of adapting, growing, and redefining what’s possible. So, let’s step into their world, and listen with open hearts. To my panel, thank you for your advocacy and for joining me!
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About Dementia Action Alliance
Dementia Action Alliance (DAA) supports living well with dementia through advocacy,
education, direct support and peer-to-peer engagement.
“Nothing About Us Without Us” governs every aspect of our organization.
This is where people come together to connect, form friendships, exchange ideas,
learn, and create a better community in which to live with dementia or mild cognitive
impairment.
We offer 6 to 10 virtual programs every week. In 2024 we provided 295
Virtual Programs with an attendance of 2,729, we also offered a number of other groups
and activates that we do not track. During the past 8 years we have confirmed
attendance of 24,929 participants.
Meet Our Panel
Laurie Scherrer
Laurie Scherrer was diagnosed with Early Onset Alzheimer's & FTD at the age of 55. Unable to continue a professional career she turned her focus towards helping others through their dementia journey. Laurie serves on the Dementia Action Alliance Executive Board of Directors and is the Program Director for DAA. She is a Dementia Mentor, Purple Angel and active in many support groups. She is frequently a cohost and panel member for Alzheimer’s Speaks Radio. Laurie is an international speaker and has been featured in many articles and documentaries including New York Times, AARP, PBC, Dementia 101, South Africa Sunday Times, and the Reading Eagle. Laurie was a member of the Persons Living With Dementia Stakeholder Group for the 2020 Dementia Summit.
On her website, dementiadaze.com Laurie shares her feelings, challenges, symptoms and adjustments in hopes of encouraging other Persons with Dementia and care partners to explore ways to live beyond dementia. Together with her husband Roy, they work hard trying to identify the obstacles that trigger Laurie’s challenges and symptoms and then figure out what adjustments they can make to overcome the barriers. “We don’t automatically accept that I CAN’T do things anymore, instead we try to figure out HOW I CAN.”
Jack George
Jack is a native of northern Michigan and is on his second “tour” of Ohio, where, in 1989, he met his wife, and (now) care partner, Susan. For 37 years, Jack held various management positions in different manufacturing industries, and was fortunate to have traveled many times to ten different countries during his career. He went on disability in 2017 after receiving an Alzheimer’s diagnosis.
As early as 2004, Jack started having symptoms of cognitive issues at the age of 48. But it wasn’t until 2016, when Susan, a Special Education teacher, really noticed a significant change in Jack’s thought processes and behaviors. It ended up taking four years, eight different diagnoses and many long road trips to countless specialists to finally hear the words-behavioral variant Frontotemporal Degeneration (bvFTD). Then, in 2021, Jack’s diagnosis was “confirmed” when he was genetically tested and found out he carries a rare hereditary gene mutation that causes FTD, in addition to Amyotrophic Lateral Sclerosis-commonly known as Lou Gehrig’s disease.
Today, Jack is an ambitious participant in FTD research, contributing to finding a cure and prevention for future generations. Meanwhile, he is applying his leadership skills through DAA to help others live well with dementia.
Monica Downer
Monica was a Special Education Teacher for 19 years. She lives in Louisville, KY with her husband, Dean, of 27 years. They have two sons (29 and 17). Monica enjoys cooking, listening to Audiobooks, and taking care of her houseplants.
After noticing she was having trouble with simple tasks such as calculating tips and multitasking, she was tested and diagnosed with MCI in 2016. She was 46 years old at the time. Her cognitive issues worsened and she was diagnosed in Frontotemporal Dementia in 2020. That diagnosis has since been changed. Her neurologist now thinks that her Lupus could be the cause of her Dementia.
Tim Perkins
Tim worked for Constellation Brands, Kodak for 20 years, taught bookbinding at the School of Printing at Rochester Institute of Technology, owned a bookbindery, and did woodworking.
When Tim was making simple mistakes at work and was running into walls, coworkers became concerned and the supervisor suggested he go to a doctor. His wife, Ann agreed and the process began.
Tim was diagnosed in 2016 at the age of 62, with Lewy Body Dementia. He says: “In a flash, my life drastically changed hurling me into the unknown. I never heard of LBD, never knew dementia was anything other than Alzheimer’s.”
Tim loves to bake, paint watercolors, and garden. He feels that the most important aspect of his life is to help others. Tim tries to guide people newly diagnosed with dementia to accept the diagnosis and find strategies to live a purpose-filled life. “I remember how hard the first year was dealing with understanding what was happening to me”
Tim has a wonderful care partner in his wife Anne, four adult kids, seven grandchildren, and one great-granddaughter.
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We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts.
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