Nothing About Us Without Us: Life, Advocacy, and Dementia Dementia Action Alliance Panel

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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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