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Defy Stereotypes
Dementia Man is your memoir, sharing your story of cognitive decline, receiving the diagnosis of early-stage Alzheimer’s, and your blunt observations on a broken medical system and call for change. Why was it important for you to share your story?
I wanted to share an authentic voice—I do have Alzheimer’s—that can help others imagine living a meaningful life with this disease. Some voices and organizations promote suicide. Many individuals lose heart and fold into themselves. I want to be a model of what might be possible, defy stereotypes, and encourage us all to strive to help find a cure to this disease. Maybe, just maybe, there is something about any one of us with a diagnosis that might help find the cure just a little sooner!
What were some ideas that were important for you to share in this book?
First, if there is anyone in your family history who has had Alzheimer’s, you should find out whether you carry a genetic marker called ApoE4. It increases your risk, and finding out early allows you to pursue medications and lifestyle changes that can help.
Second, be careful. Frauds and scams abound around this disease. There is no cure. Hard stop. Many excellent U.S. government and state government resources are available on safe, effective approaches to slowing decline and getting help.
Third, I provide a list of a growing number of patient-led organizations that offer support, community, and guidance to help you and your family navigate this stage of life with dignity, purpose—and yes, even some joy.
What was the most challenging part of writing your memoir, and what was the most rewarding?
So many challenges… it’s hard to pick. Yes, the challenge of memory impairment and writing means I need some help, and I use a writing coach. It is frustrating. There is also the emotional impact of imagining the late stages. The most rewarding thing is the impact it has had on others and on myself. The responses shared with me by readers are humbling—not about my writing, but about insights gained and the hope instilled as they, or a family member, move forward.
What is one thing that you hope readers take away from Dementia Man: An Existential Journey: Choosing Life and Finding Meaning with Alzheimer’s?
The one thing is that it is possible to engage with purpose, love, and joy in life with this disease. You are NOT alone; there is a world out there of help and support. You can become the best version of yourself with Alzheimer’s that the world has ever seen. I have tried to include many resources—things I didn’t even know existed—that are available almost everywhere. Just one small example: I didn’t know that 211 existed, a phone number people can call to locate essential community services.
Author Links: GoodReads | X (Twitter) | Facebook | Website | Amazon
After decades as a tireless advocate for justice and social change, Samuel A. Simon faces the most personal fight of his life: the slow, undeniable progression of cognitive decline. When the diagnosis of Alzheimer’s disease comes, he refuses to fade quietly.
Based on his award-winning play Dementia Man, this deeply personal memoir invites readers into Simon’s “existential journey”—a story told with candor, courage, and an unflinching look at a broken medical system. As he revisits pivotal moments from his past and navigates the daily challenges of neurocognitive disease, Simon offers an intimate portrait of a man determined to shape his own future, even as the disease seeks to define it.
Both moving and urgently important, Dementia Man is changing the conversation about Alzheimer’s in America. It’s a story of hope and defiance that challenges us all to imagine a future of dignity, connection, and purpose for the millions living with cognitive decline.
Dementia Man
Dementia Man tells the story of Sam Simon as he moves from early memory lapses to a diagnosis of Mild Cognitive Impairment and then early-stage Alzheimer’s. He shares vivid scenes from his life. He brings the reader into the raw moments of confusion, fear, stubborn hope, and even humor as he and his wife, Susan, navigate a medical system that often leaves people like him stranded. The book blends memoir, social critique, and a call for change. It follows Sam’s love story, his activist past, his moments inside what he calls The Nothingness Place, and his determination to choose life for as long as he can.
This is an emotional memoir. The writing feels close to the skin, almost like Sam is talking straight at me from across a kitchen table. His descriptions are sharp and strange at the same time. I kept pausing because the images stayed with me. His voice has this mix of clarity and fog that mirrors the disease he is trying to explain. Some passages made me laugh because he can be blunt and warm in the same breath. He shows how lonely and scary cognitive decline can be when the world does not know how to help. What struck me most was how he refused to let fear become the whole story.
He questions the medical system in a way that feels earned, not angry for the sake of it. He wants navigators for people with cognitive disorders. He wants society to change the way we talk about brain diseases. He wants families to have real support. His push for dignity feels bold and simple at the same time. The honesty about his own confusion and frustration gave the book a heartbeat. It is not a tidy narrative, and that is exactly what makes it feel real.
I would recommend this book to caregivers, medical professionals, families who are beginning this journey, and anyone who wants to understand what cognitive decline feels like from the inside. It is also a strong read for advocates and students in health fields who need to hear a patient’s voice in full color. Above all, it is for readers who want a story about choosing life even when life gets hard.
Pages: 209 | ASIN : B0G1TZRVXL
