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Proudly Hosting The Dementia Collective Podcast!

What happens when the caregiver becomes the person living with dementia? In this episode, Andrew Karesa sits down with Michael Booth, dementia advisor, educator, advocate, and author, to explore what it means to navigate life after a young onset Alzheimer’s disease diagnosis while continuing to create, teach, and challenge the stigma surrounding dementia. Michael shares the deeply personal journey of caring for his mother after her diagnosis, only to later receive a diagnosis of his own. He reflects on the early symptoms he dismissed as stress, the devastating week that followed his diagnosis when he lost his driver’s licence, his career, and his independence, and how those experiences reshaped the purpose of his life. Together, Andrew and Michael discuss caregiving, young onset dementia, the realities of diagnosis, and why so many misconceptions about dementia continue to persist. They also explore why Michael chose to write Forget Me Not: The Letter in the Headboard, the first known murder mystery written by an author living with dementia, using fiction to help readers experience life through the eyes of someone living with the disease. This is a conversation about dementia, caregiving, stigma, purpose, advocacy, creativity, resilience, and choosing to live fully in the present. In this episode: • Michael’s journey from caregiver to living with young onset Alzheimer’s disease • What happened in the week following his diagnosis • Why he believes empathy matters more than sympathy • The challenges families face caring for someone with dementia • How writing became both therapy and advocacy • The story behind Forget Me Not: The Letter in the Headboard • Why he believes dementia education needs to change • The importance of accepting support after a diagnosis • Living in the present when the future feels uncertain • What gives him hope despite living with dementia Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or someone living with dementia, this conversation is a powerful reminder that a diagnosis does not erase a person’s purpose. Michael’s story challenges assumptions about what people living with dementia are capable of and reminds us that while dementia may change a life, it does not define the person living it. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.michaelanthonyboothauthorpage.co.uk/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating Memory Challenges in Writing 03:28 The Journey of a Dementia Advocate 06:29 Understanding Dementia Through Personal Experience 09:21 The Caregiver's Perspective 12:34 Project Management in Writing and Caregiving 14:35 Advocacy and Education in Dementia Care 16:56 The Impact of Diagnosis on Life 19:39 Navigating Family Dynamics and Caregiving 22:47 Lessons Learned in Caregiving 25:46 Research and Understanding Dementia 28:57 Living in the Present with Dementia 31:53 Coping with Diagnosis and Grief 40:38 Navigating Relationships During Illness 44:24 Life Changes Post-Diagnosis 46:46 The Journey of Writing a Novel 55:34 Feedback and Impact of the Novel (Forget Me Not: The Letter in the Headboard) 57:03 Lightning Round 01:00:10 Living with Dementia: Insights and Reflections ——— Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use. 1:8:34
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC44Rjc3MDE3QTkyQ0YyOEIx

The Letter in the Headboard: A Novel Born from Dementia (with Michael A. Booth) | EP46

What does it take to turn one father’s final request into a movement that is changing how the world thinks about dementia? In this episode, Andrew Karesa sits down with Hassan Fadli, engineer, endurance athlete, filmmaker, and founder of the nonprofit initiative Five Ironmans Beat Alzheimer’s. After his father’s Alzheimer’s diagnosis, Hassan was asked to do something not just for his family, but for everyone affected by dementia. The very next day, he committed to completing five full Ironman triathlons in a single year, using endurance sport as a platform to challenge stigma, promote brain health, and inspire action. Hassan shares his father’s journey from denial to acceptance, the moment that changed everything during a quiet conversation in the family garden, and why that single request became the foundation for an international advocacy movement. He reflects on balancing caregiving with work, supporting his exhausted mother, and discovering years later that many of the lessons his family learned through trial and error could have been taught from the very beginning. The conversation explores the powerful connection between physical activity and brain health, while also examining the broader systems that shape life after a dementia diagnosis. Hassan discusses caregiver education, dementia-friendly communities, day programs, public policy, and why so many practical solutions already exist but remain inaccessible to families who need them most. Alongside the five Ironman races, Hassan and his team spent years filming a documentary across Europe, interviewing more than one hundred people including neurologists, caregivers, policymakers, researchers, people living with dementia, and even Queen Silvia of Sweden. Rather than searching only for the problems, the film asks a different question: what is already working, and how can we learn from it? This is a conversation about Alzheimer’s disease, caregiving, endurance sport, advocacy, prevention, hope, and what becomes possible when one person’s purpose grows into a movement. In this episode: • The early signs of Hassan’s father’s Alzheimer’s disease and the family’s experience with denial • The conversation that inspired Five Ironmans Beat Alzheimer’s • Why Hassan chose to complete five full Ironman triathlons in one year • How endurance sport became a tool for dementia advocacy • What training 15 to 20 hours per week taught him about purpose over performance • The growing evidence linking physical activity and brain health • The biomarker research studying endurance athletes at higher genetic risk for Alzheimer’s disease • What Hassan learned from interviewing more than 100 experts, caregivers, and people living with dementia across Europe • Dementia-friendly communities, caregiver education, and practical solutions families can use today • Why day programs may be one of the most underutilized supports for both caregivers and people living with dementia • The role governments can play in better supporting family caregivers • Why Hassan believes there is more hope in dementia care today than ever before Whether you’re living with dementia, caring for someone you love, passionate about brain health, or simply looking for hope in the face of one of society’s greatest health challenges, this conversation is a powerful reminder that meaningful change often begins with one person deciding to do something. Learn more at: https://www.bluebellvillage.ca https://www.5ironmansbeatalzheimer.com/en ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 What to Expect: Hassan Fadli 01:00 Hassan Fadli 07:18 Hassan's Journey and the Birth of the Initiative 11:55 The Call to Action from Hassan's Father 18:53 Support from IRONMAN 23:55 Future Plans and Community Engagement 29:58 Physical Activity and Alzheimer's Prevention 33:19 Personal Experiences and Race Reflections 45:26 Connecting with the Public: The Documentary's Mission 50:44 The Role of Art and Sports in Dementia Awareness 56:08 Dementia-Friendly Cities: Urban Solutions for Care 01:02:55 The Need for Policy Change: Supporting Caregivers 01:08:50 The Complexity of Caregiving: Balancing Work and Family 01:16:04 Lightning Round 01:21:21 Final Thoughts: Hope and Solutions for Dementia Care ——— 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. 1:24:49
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5GRjZBMzg1QjYxMDdEQTZF

Five IRONMANs to Beat Alzheimer's (with Hassan Fadli) | EP45

What happens when someone whose life has been built around words is forced to watch the person they love slowly lose the ability to find them? In this episode, Andrew Karesa sits down with Dr. Cindy Weinstein, the Eli and Edythe Broad Professor of English at Caltech, Atlantic Fellow for Equity in Brain Health, and co-author of Finding the Right Words. Together, they explore her father’s journey with early-onset Alzheimer’s disease, the grief that followed, and how decades later she finally found the words to tell his story. Cindy shares the early signs that something was changing, the heartbreak of watching her father struggle to retrieve everyday words, and why a simple grocery store trip searching for the word “croutons” became the story that inspired her memoir. She reflects on caring for her father from across the country, writing him letters she knew he could no longer read, and the guilt that often accompanies long-distance caregiving. The conversation also explores how language influences the way we think about dementia. From terms like “battle” and “agitation” to the importance of speaking directly to a person living with dementia, Cindy explains why the words we choose have consequences for dignity, stigma, and care. Perhaps most moving is her reflection on writing the book itself. Years after her father’s death, she realized she hadn’t lost her memories of him, she had simply protected them because they were too painful to revisit. Writing became her way of remembering the healthy father she thought she had lost and, in her words, her own version of sitting Shiva. This is a conversation about Alzheimer’s disease, language, grief, caregiving, memory, family, and the extraordinary power of stories to preserve the people we love. In this episode: • The early signs of her father’s young-onset Alzheimer’s disease • How the logopenic variant of Alzheimer’s affects language and word finding • The unforgettable “crouton” story that inspired Finding the Right Words • Why she continued writing letters her father could no longer read • The emotional reality of long-distance caregiving • What she wishes she had known about communicating beyond words • The power of music, touch, animals, and shared experiences in dementia care • Why authenticity matters when telling caregiving stories • How literature helped her process grief and suffering • The language of dementia and why words like “battle” and “agitation” deserve more careful thought • Practical advice for caregivers seeking support and avoiding isolation • Why writing became an act of preservation and helped her recover memories of her father • What reaching the same age as her father’s diagnosis taught her about purpose, resilience, and hope Whether you’re living with dementia, supporting someone you love, working in healthcare, or simply trying to understand the human experience behind Alzheimer’s disease, this conversation is a reminder that even when words become harder to find, love, dignity, and connection can endure. Learn more at: https://www.bluebellvillage.ca https://www.professorcindy.com/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating the Language of Suffering 16:04 The Journey of Diagnosis and Caregiving 22:01 Navigating Graduate School and Family Crisis 25:08 The Burden of Caregiving from Afar 28:02 Vulnerability in Sharing Family Stories 33:10 Sibling Dynamics in Caregiving 38:42 Understanding Alzheimer's Variants 42:17 The Crouton Story: A Metaphor for Communication Loss 49:42 Advice for Caregivers: Learning from Experience 52:55 Finding Support and Resources for Caregivers 58:03 Preserving Memories Through Writing 01:04:44 The Emotional Journey of Writing a Memoir 01:06:32 Understanding Grief and Guilt in Caregiving 01:08:49 The Role of Literature in Explaining Dementia 01:10:40 Reflections on Aging and Life Choices 01:13:31 The Importance of Language in Dementia Care 01:21:48 Finding Humor Amidst Grief 01:25:15 Lightning Round ——— 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. 1:33:00
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC41RjNCNjdGQUYwMEEyRkMx

When Words Fail, Stories Heal in Dementia Care (with Dr. Cindy Weinstein) | EP44

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