Show Notes
What happens when dementia enters your family before you even know how to name it?
In this episode, Andrew Karesa sits down with Katie Brandt, global advocate, national dementia care expert, and Director of Caregiver Support Services at the Massachusetts General Hospital Frontotemporal Disorders Unit, to talk about young caregiving, frontotemporal dementia, Alzheimer’s disease, grief, advocacy, and what it means to keep showing up when life changes all at once.
Katie shares the story of her husband, Mike, who was diagnosed with behavioral variant frontotemporal dementia at only 29 years old. At the time, their son Noah was not yet one. Just weeks later, Katie’s father was diagnosed with young-onset Alzheimer’s disease. Suddenly, Katie found herself caring for two adult men living with progressive neurodegenerative diseases while also raising her young child.
Together, Andrew and Katie discuss the early signs of FTD, why the symptoms are so often misunderstood, and how families can mistake changes in behaviour, personality, judgment, and impulse control for something other than dementia.
This is a conversation about FTD, young-onset dementia, caregiving, grief, love, advocacy, and the systems that too often leave families to figure everything out on their own.
In this episode: • Katie’s journey as a young caregiver, wife, mother, and daughter • How Mike was diagnosed with behavioral variant FTD at 29 • Why FTD is often mistaken for depression, a midlife crisis, or relationship problems • How Katie’s father’s young-onset Alzheimer’s diagnosis changed her caregiving role • The guilt and grief of moving a loved one into care • How diagnosis gave Katie back her love story with Mike • How young caregivers are often misunderstood • The role of advocacy, policy, research, and community in changing dementia care • Why support should not disappear after the person living with dementia dies
Whether you are caring for someone with FTD, Alzheimer’s disease, young-onset dementia, or another diagnosis, this conversation is a reminder that dementia does not only affect the person living with it. It changes families, relationships, futures, and identities. But it also shows why community, support, and honest conversations matter so deeply.
Learn more at: https://www.bluebellvillage.ca https://www.katiebrandt.org https://www.ftdboston.org
———
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?