Show Notes
People sometimes describe receiving a dementia diagnosis as something that feels like it will shatter their life.
In this Ask the Experts conversation, Andrew Karesa asks Michael Booth, Samuel Simon, Phyllis Fehr and Jim Mann: “As someone who has been through this journey, what is the first step that you would have to support someone in moving past the initial fear and reclaiming control over their future?”
Speaking from lived experience, they discuss what helped them move forward after diagnosis, including accepting support, talking openly with others, seeking professional and peer support, allowing space for grief without remaining trapped in it, and learning to live more fully in the present.
They also reflect on making practical changes, planning for the future, protecting personhood, challenging stigma, finding purpose, and adapting to life in ways that still allow for choice, connection, and meaning.
This is not a conversation about giving up on the future. It is about recognizing that a diagnosis does not erase the person, and that reclaiming control can begin with one honest conversation, one decision to accept support, and one step toward living in the present. If this conversation resonates with you, please like, comment, and subscribe. On podcast platforms, follow the show so you do not miss future conversations.
Consider becoming a member of the village on Patreon, it will go a long way in helping break dementia stigma. For only the price of a Starbucks coffee per month, you can help support conversations like this and submit questions for future 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?