Show Notes
What does it mean to keep living fully after an Alzheimer’s diagnosis, especially when the world so often treats dementia as the end of a person’s life?
In this episode, Andrew Karesa sits down with Samuel Simon, playwright, former consumer advocate, and the creator of Dementia Man. After a lifelong career fighting for the public interest, Sam is now using theatre to challenge one of the most damaging ideas surrounding dementia: that a diagnosis makes a person less human, less capable, or less worthy of a meaningful future.
Sam shares his own experience living with Alzheimer’s, from the early signs that something was changing to the word-finding difficulties, disorientation, and adjustments that have become part of everyday life. He speaks honestly about the fear dementia can create, but also about why fear should not be allowed to decide what comes next.
At the centre of this conversation is Sam’s strong opposition to assisted dying for people living with cognitive decline. He explains why he believes a dementia diagnosis should not become a reason for someone to feel like a burden, give up on their future, or conclude that their life is no longer worth living.
In this episode: • Why he rejects the idea that dementia should be treated like a death sentence • His experience with early cognitive changes, memory loss, and word-finding challenges • The “nothingness place” he experienced while trying to find words • Why stigma can make people with dementia feel excluded from ordinary life • How practical supports can help people remain independent for longer • What improv’s “yes, and” approach can teach caregivers and families • Why Sam speaks out against assisted dying for people with Alzheimer’s • The danger of believing you have become a burden to your family • How community, creativity, exercise, friendship, and purpose continue to shape his life • Why people living with dementia must remain part of the conversation about their own futures
Whether you are living with dementia, supporting someone you love, working in care, or trying to better understand what an Alzheimer’s diagnosis can mean, this conversation offers a powerful reminder: Dementia changes life, but it does not erase personhood. And it does not mean life is over.
Learn more at: https://www.bluebellvillage.ca https://www.dementiaman.com
———
Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage
———
Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members.
More from The Dementia Collective
What if learning about dementia started before a family ever had to face it?
What happens when someone who has spent his life rescuing people faces something he cannot rescue his own mum from? In this episode, Andrew Karesa sits down with Andrew “Reidy” Reid, longtime Bondi Rescue lifeguard, endurance athlete and dementia advocate, for an incredibly open conversation about lifeguarding, family, caregiving, grief, endurance sport, and his mum Trish’s journey with dementia. Reidy has spent more than 20 years as a lifeguard, becoming one of the familiar faces of Bondi Rescue. He has also completed more than 50 marathons, competed in Ironman triathlons, and even holds a Guinness World Record for running a marathon carrying a surfboard. But years before dementia became part of his own family, Reidy had already started using that endurance background to support dementia research through the 155-kilometre Bondi2Berry ride. Then his mum, Trish, was diagnosed with Alzheimer’s disease and vascular dementia. The conversation explores Reidy’s life beyond dementia, from growing up around Bondi and becoming a lifeguard to the beginnings of Bondi Rescue, extraordinary rescues, more than 50 marathons, Ironman racing, his 2:49 marathon, and the unlikely story behind his Guinness World Record marathon carrying a surfboard. In this episode: Growing up around Bondi and how Reidy became a lifeguard The real-life rescues behind Bondi Rescue What more than 20 years of lifeguarding has taught him about patience and caregiving Trish’s early signs of dementia and eventual diagnosis What it feels like to mourn someone who is still alive The emotional difficulty of visiting a parent living in a nursing home Navigating caregiving and complicated family relationships The wild story behind running a 3:17 marathon carrying a surfboard Bondi2Berry and raising money for dementia research This is a conversation about much more than Bondi Rescue. It is about what happens when the person accustomed to being the rescuer becomes a son trying to navigate something he cannot fix. Learn more at: https://www.bluebellvillage.ca ———
NOTE: This is Part 2 of 2 of our Silver Tech Summit 2.0 special. In this special episode of The Dementia Collective, Andrew Karesa sits down with seven guests at the Silver Tech Summit 2.0 in Edmonton to explore what aging well really looks like, who gets a say in shaping that future, and why older adults need to be part of the conversation. Featuring: Darlene Schindel, Founder, NurseWell Collective Dr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of Alberta Janice Baskin, Manager, Edmonton Regional Innovation Network Karen Murdock, Founder, Silver Longevity Business Association Jay Pritchard, President, WE Seniors Zoran Kovacevic, entrepreneur and founder of Pace Pet Chief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services Critic In this episode: What “Build With Us, Not For Us” actually means Why older adults need a voice in the technologies and services created for them Why care is about more than technology Loneliness, isolation, and rebuilding community Turning research and innovation into real-world solutions Entrepreneurship and designing alongside the people you serve Indigenous entrepreneurship and culturally appropriate care for Elders Rethinking how we define and measure successful aging This special episode was filmed at and produced in conjunction with the Silver Tech Summit 2.0, hosted by WE Seniors in Edmonton, Alberta. Learn more at: https://www.bluebellvillage.ca https://silvertechsummit.ca/ https://slba.ca/ ———
NOTE: This is Part 1 of 2 of our Silver Tech Summit 2.0 special. In this special episode of The Dementia Collective, Andrew Karesa sits down with seven guests at the Silver Tech Summit 2.0 in Edmonton to explore what aging well really looks like, who gets a say in shaping that future, and why older adults need to be part of the conversation. Featuring: Darlene Schindel, Founder, NurseWell Collective Dr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of Alberta Janice Baskin, Manager, Edmonton Regional Innovation Network Karen Murdock, Founder, Silver Longevity Business Association Jay Pritchard, President, WE Seniors Zoran Kovacevic, entrepreneur and founder of Pace Pet Chief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services Critic In this episode: What “Build With Us, Not For Us” actually means Why older adults need a voice in the technologies and services created for them Why care is about more than technology Loneliness, isolation, and rebuilding community Turning research and innovation into real-world solutions Entrepreneurship and designing alongside the people you serve Indigenous entrepreneurship and culturally appropriate care for Elders Rethinking how we define and measure successful aging This special episode was filmed at and produced in conjunction with the Silver Tech Summit 2.0, hosted by WE Seniors in Edmonton, Alberta. Learn more at: https://www.bluebellvillage.ca https://silvertechsummit.ca/ https://slba.ca/ ———
What does caregiving look like when no one sees what you’re carrying?