The Dementia Collective

blueBell Village

Caring for someone with dementia can feel overwhelming but you don’t have to do it alone. The Dementia Collective is a podcast for caregivers seeking real support and fresh ideas. Hosted by Andrew Karesa, founder of blueBell Village, each episode features conversations with caregivers, clinicians, and innovators who bring practical insights, lived experience, and unexpected resources to light. Whether it’s navigating daily challenges, learning about emerging supports, or hearing stories from others on the journey, this podcast is here to help. We’re here to walk alongside you

  1. 21h ago

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

    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 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 ——— 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.

    The Letter in the Headboard: A Novel Born from Dementia (with Michael A. Booth)
  2. Aug 26

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

    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. 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 • 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 • 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 ——— 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.

    Five IRONMANs to Beat Alzheimer's (with Hassan Fadli)
  3. Aug 19

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

    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. 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 • 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 • The language of dementia and why words like “battle” and “agitation” deserve more careful thought • 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 ——— 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.

    When Words Fail, Stories Heal in Dementia Care (with Dr. Cindy Weinstein)
  4. Aug 12

    Reframing Dementia: The Case Against Assisted Dying (with Samuel Simon)

    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.

    Reframing Dementia: The Case Against Assisted Dying (with Samuel Simon)
  5. Aug 5

    Why Dignity in Care Looks Nothing Like You Think (with Varsha Bhat)

    What does it mean to care for someone with dignity when culture, language, family, and personal identity are often overlooked? In this episode, Andrew Karesa sits down with Varsha Bhat, business and innovation leader, caregiver advocate, Vice-Chair of the Alzheimer Society of Montreal, and host of the Aging With Dignity podcast. Varsha shares how her mother’s dementia diagnosis and her father’s sudden cardiac decline changed the course of her life. While continuing to work and manage her own responsibilities, she helped coordinate home care, palliative care, medical decisions, and support for both parents. Together, Andrew and Varsha explore why dignity is personal, why cultural competency matters in dementia care, and why completing tasks is not the same as truly caring for someone. They also discuss the role of community, the challenges faced by first-generation immigrant families, caregiver burnout, family privacy, and the pressure to make every decision correctly. This is a conversation about dementia, culture, caregiving, grief, compassion, and the importance of seeing the person behind the diagnosis. In this episode: • Varsha’s journey from daughter to caregiver • Her mother’s corticobasal degeneration diagnosis • Caring for both parents at the same time • Cultural competency in dementia and eldercare • Why dignity means something different to every person • The role of community in supporting caregivers • Navigating home care and palliative care • Why caregivers cannot do everything alone • Accepting that caregiving decisions will not always be perfect • How Varsha’s experience inspired Aging With Dignity Whether you are a caregiver, healthcare professional, or family member, this conversation offers an honest look at what dignified care requires and why compassion must remain at the centre of it. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://agingwithdignity.podbean.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.

    Why Dignity in Care Looks Nothing Like You Think (with Varsha Bhat)
  6. Jul 29

    When Caregiving Becomes Stewardship (with Lizette Cloete)

    What happens when dementia challenges not only how we care, but what we believe about a person’s value? In this episode, Andrew Karesa sits down with Lizette Cloete, founder of Think Different Dementia, occupational therapist, dementia advisor, family caregiver, and host of the Dementia Caregiver Support for Christians podcast. Drawing on more than 30 years of experience and her own caregiving journey, Lizette shares how her Christian faith has shaped the way she understands dementia, caregiving, personhood, and responsibility. She reflects on caring for her father, the challenges of family caregiving, and why dementia often exposes deeper questions about relationships, expectations, suffering, and what it means to love someone well. Together, Andrew and Lizette explore the tension between truth and validation, caregiver burnout and stewardship, and why many families struggle to ask for help. They discuss the role churches can play in supporting dementia caregivers, how faith communities can better respond to cognitive change, and why people living with dementia never lose their dignity or worth. This is a conversation about caregiving, faith, family, burnout, dignity, responsibility, and the enduring value of every person living with dementia. In this episode: • Lizette’s journey into occupational therapy and dementia care • Becoming a caregiver for her own father • Why family caregiving is different from professional caregiving • The role faith plays in navigating dementia • Why caregiver burnout should be viewed through the lens of stewardship • The hidden impact of family history and relationships • How churches can better support dementia families • Cultural expectations around caregiving • Why people living with dementia never lose their value • Why caregiving was never meant to be done alone Whether you are a caregiver, a healthcare professional, a member of a faith community, or simply trying to better understand dementia, this conversation offers a thoughtful perspective on caring for others while remembering the dignity and humanity that remain throughout the journey. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://www.dignicarebydesign.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.

    When Caregiving Becomes Stewardship (with Lizette Cloete)
  7. Jul 23 ·  Bonus

    Ask the Experts: What Comes After a Dementia Diagnosis?

    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.

    Ask the Experts: What Comes After a Dementia Diagnosis?
  8. Jul 22

    Caregivers Are Not a Given: Why the System Is Breaking (with Stephanie Muskat)

    What happens when the people holding the care system together start to break? In this episode, Andrew Karesa sits down with Stephanie Muskat, an award-winning registered clinical social worker, psychotherapist, caregiver advocate, and founder of Compassion in Caregiving, to explore the emotional, practical, and systemic realities of caregiving. Stephanie shares her story of becoming a caregiver at 19, when her mother began showing signs of what was later diagnosed as frontotemporal dementia. As an only child, she was suddenly navigating doctors, specialists, hospitals, discharge planning, and family dynamics while trying to build her own life. Together, Andrew and Stephanie discuss what caregivers carry that often goes unseen: guilt, anger, burnout, resentment, grief, and the pain of family members who do not show up. They also explore why caregivers are often treated as a “given” in the healthcare system, despite holding so much of it together. Stephanie challenges the label of the “difficult caregiver” and explains why advocacy is often misunderstood when families are trying to protect someone they know best. She also reflects on young caregiving, children and dementia, cultural expectations, caregiver mental health, and why dementia should not be hidden from family life. This is a conversation about caregiving, family, burnout, advocacy, guilt, grief, and the urgent need to stop treating caregivers as invisible background support. In this episode: • Becoming a caregiver at 19 • Why frontotemporal dementia can be hard to recognize • When family members do not show up • The harm of calling someone a “difficult caregiver” • How unpaid caregivers hold the system together • Why anger can be a sign of burnout • The guilt of choosing between caregiving and your own life • Why children should not automatically be hidden from dementia • How culture and family expectations shape caregiving • Why caregivers need more than awareness and good intentions Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or loved one living with dementia, this conversation is a reminder that caregivers are people too. They are not a given. And they should not have to break before anyone notices they need help. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://compassionincaregiving.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.

    Caregivers Are Not a Given: Why the System Is Breaking (with Stephanie Muskat)
5
out of 5
7 Ratings

About

Caring for someone with dementia can feel overwhelming but you don’t have to do it alone. The Dementia Collective is a podcast for caregivers seeking real support and fresh ideas. Hosted by Andrew Karesa, founder of blueBell Village, each episode features conversations with caregivers, clinicians, and innovators who bring practical insights, lived experience, and unexpected resources to light. Whether it’s navigating daily challenges, learning about emerging supports, or hearing stories from others on the journey, this podcast is here to help. We’re here to walk alongside you

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