Show Notes
What happens when childhood unfolds alongside loss — not all at once, but slowly, quietly, and long before anyone knows how to name it?
In this episode, Andrew Karesa sits down with Spencer Cline — FTD advocate, former college basketball player, endurance athlete, and AFTD Ambassador — to talk about what it means to grow up while a parent is living with dementia. Spencer’s father began showing symptoms of frontotemporal dementia shortly after Spencer was born, was diagnosed when Spencer was seven, and later identified as carrying the C9orf72 genetic variant, a mutation linked to both FTD and ALS. His father passed away in 2012, but the impact of the disease shaped Spencer’s life long before that moment.
Spencer shares what it was like to grow up inside a disease few people understood while still trying to be a kid.
The conversation also explores the role sport played in Spencer’s life. Later, that same drive showed up in a different form: a 3,700-mile bike ride across the United States to raise awareness for FTD. Spencer recounts the physical and emotional demands of the journey, the strangers who carried him when his body couldn’t, and what endurance taught him about collective grief, community, and resilience.
Andrew and Spencer also dig into the realities of genetic dementia — the fear, uncertainty, and existential weight of knowing you may carry the same mutation that took your parent. Spencer reflects on how that knowledge shapes the way he lives, loves, and plans for the future, and why advocacy has become both an outlet for grief and a source of purpose.
In this episode: • What children actually need when a parent is living with dementia • Why choice and autonomy matter for young caregivers • How growing up with FTD shaped Spencer’s emotional awareness and resilience • The role of sport as refuge, identity, and survival • What endurance challenges reveal about grief and community • The realities of living with genetic risk • Why FTD is often misdiagnosed — and why that matters • How awareness work can move beyond slogans into real impact • The unseen emotional cost of dementia on children and families
This conversation offers honesty, clarity, and a rare perspective on what it means to grow up fast — and keep going anyway.
Learn more at: https://www.bluebellvillage.ca https://www.theaftd.org
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?