The Dementia Collective

blueBell Village
  • 5.0 (10)
  • Mental Health
  • Updated Weekly

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. 2d ago

    Childhood Dementia: A Family's Journey to Save Their Daughter (with Emily Forrester)

    What if your two-year-old was happy, healthy, and meeting her milestones, but you were told she would eventually begin to lose everything she had learned? In this episode, Andrew Karesa sits down with Emily Forrester, mum to Leni and childhood dementia advocate, to share her family’s journey after Leni was diagnosed with Sanfilippo syndrome Type B, a rare and progressive form of childhood dementia. Emily takes us through the unexpected path to Leni’s diagnosis, including the genetic testing that initially gave their family the wrong answer, the reality of raising a child with an ultra-rare condition, and what it means to know that without an effective treatment, Leni is expected to progressively lose her speech, cognition and mobility. Together, Andrew and Emily explore the gaps families encounter navigating childhood dementia, from delayed diagnosis and fragmented care to education, work, research funding and access to clinical trials. Emily also shares why her family is fighting to get Leni access to potential treatment while she is still young, and why early diagnosis can make such an important difference. In this episode: Who Leni is today and what life looks like for her familyHow Leni was diagnosed with Sanfilippo syndrome Type BWhy childhood dementia can be so difficult to diagnoseWhat Sanfilippo can mean for a child’s developmentWhy early diagnosis mattersThe fragmented system families are expected to navigateThe impact caregiving and advocacy can have on work and family lifeWhy Emily believes childhood dementia needs greater recognitionThe clinical trials offering families hope for potential treatmentsWhy funding remains such a major challenge in rare disease researchHow sharing Leni’s story has created awareness around the worldWhat people can do to support families affected by Sanfilippo and childhood dementia This is a conversation about childhood dementia, family, motherhood, rare disease, advocacy, hope, and one family’s fight to give Leni the future she deserves. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.gofundme.com/f/lenis-lifesaving-treatment Saving Leni Book (Amazon) ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— This episode is brought to you by Eugeria. Check out their website for dementia products you can trust. ——— 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.

    Childhood Dementia: A Family's Journey to Save Their Daughter (with Emily Forrester)

  2. 3d ago

    Inside Canada's First Dementia-Inclusive Park

    What would it look like if our public spaces were designed to include people living with dementia? In this special episode of The Dementia Collective, Andrew Karesa sits down with Junette Huynh, Director of Projects, and Lindsay Paul, Director of Philanthropy and Partnerships at Parks Foundation Calgary, to explore the story behind the Martin Family Legacy Garden, Canada’s first dementia-inclusive public park. Opening in Calgary’s Dover community, the park was shaped through years of collaboration with Alzheimer Calgary, people living with dementia, caregivers, researchers, community organizations, and other partners. Junette and Lindsay explain how those perspectives influenced everything from colour-coordinated walking loops and wayfinding to accessible pathways, familiar furnishings, sensory elements, quiet spaces, and an intergenerational playground.  In this episode: How Canada’s first dementia-inclusive public park came to beWhat actually makes a park dementia inclusiveThe principles of designWhy walking loops, wayfinding, familiar design, and accessible pathways matterThe role of intergenerational spaces in reducing dementia stigmaHow philanthropy and community partnerships brought the project to lifeHow the park will be used for programming and future researchHow dementia-inclusive design could be incorporated into parks across Canada This is a conversation about dementia, accessibility, independence, community, and what can happen when we design public spaces with people living with dementia in mind. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://parksfoundation.ca/projects-and-partnerships/dementia-inclusive-park/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— This episode is brought to you by Eugeria. Check out their website for dementia products you can trust. ——— 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.

    Inside Canada's First Dementia-Inclusive Park

  3. Sep 16

    Building a Better World for Dementia (with Valerie Larochelle)

    What if we could build a world that works better for people living with dementia? In this episode, Andrew Karesa sits down with Valerie Larochelle, CEO and co-founder of Eugeria, to explore how better products, technology, environments, and communities can help people living with dementia maintain independence, autonomy, and quality of life. Valerie’s work is deeply personal. Three of her four grandparents experienced cognitive impairment, including Alzheimer’s disease and vascular dementia. She shares what those experiences taught her about the difference between living with dementia and suffering from it, the realities families face navigating care, and why a dementia diagnosis does not mean that joy and meaningful life disappear. Together, Andrew and Valerie explore how dementia care can move beyond simply monitoring people toward actually supporting them. Valerie explains how thoughtfully designed technologies, from adapted phones and calendar clocks to medication dispensers and emerging AI tools, can compensate for cognitive changes and help people continue doing things for themselves. They also discuss the importance of bringing generations together, why children should not automatically be shielded from dementia, and what Valerie has learned from introducing her own children to family members living with cognitive impairment. In this episode: Valerie’s family experience with Alzheimer’s disease and vascular dementiaThe difference between living with dementia and suffering from dementiaWhy dementia can look different for every familyHow Eugeria identifies and tests products for people living with dementiaWhy dementia technology should support independence, not just monitor peopleHow cognitive aids can help people remain at home longerThe potential for AI to compensate for cognitive changesWhy children should be included in the lives of people living with dementiaThe importance of intergenerational communitiesWhy Valerie believes there can still be joy and quality of life with dementiaHow LEGO, design, and creativity could play a role in building a better world for aging This is a conversation about dementia, caregiving, innovation, independence, family, technology, and what it might look like to build a world designed to support people as their needs change, without losing sight of the person at the centre of it all.  ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 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.

    Building a Better World for Dementia (with Valerie Larochelle)

  4. Sep 9

    The Gift of Talking About Death Before It's Too Late (with Lisa Pahl)

    What happens when we stop avoiding conversations about death and start talking about what matters most? In this episode, Andrew Karesa sits down with Lisa Pahl, licensed clinical social worker, end-of-life educator, healthcare and death doula, and CEO of The Death Deck, to explore why some of life’s most difficult conversations may also be the most important. Drawing on nearly two decades of hospice experience and her own family’s journey with Alzheimer’s disease, Lisa shares why planning ahead is one of the greatest gifts we can give the people we love. She reflects on caring for her grandmother with dementia, the lessons she learned supporting her mother-in-law through cancer, and how those experiences inspired the creation of The Death Deck, The End-of-Life Deck, and The Dementia Deck. Together, Andrew and Lisa discuss why families often avoid conversations about dementia and death, what happens when those discussions never occur, and how uncertainty can lead to conflict, guilt, and second-guessing during some of life’s hardest moments. They also explore hospice care, advance care planning, preserving personhood, caregiver support, and why preparing for the future is not about giving up hope but about giving families clarity. This is a conversation about dementia, caregiving, hospice, family, grief, personhood, and the courage to have conversations before a crisis forces them. In this episode: • Why conversations about death should happen long before a crisis • The lessons she learned caring for her grandmother with Alzheimer’s disease • How families can prepare for difficult healthcare decisions • Why preserving personhood matters throughout dementia • What to look for when choosing a hospice provider • Why advance care planning is a gift to your family • How The Dementia Deck helps families start difficult conversations • Why talking about death can help us live more intentionally Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or someone living with dementia, this conversation is a reminder that none of us can predict the future. But by having honest conversations today, we can help the people we love face tomorrow with greater confidence, compassion, and peace. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://thedeathdeck.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.

    The Gift of Talking About Death Before It's Too Late (with Lisa Pahl)

  5. Sep 2

    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)

  6. 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)

  7. 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)

  8. 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)
See All (63)

Trailer

5
out of 5
10 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

Information

  • Creator
    blueBell Village
  • Years Active
    2025 - 2026
  • Episodes
    63
  • Rating
    Explicit
  • Copyright
    © 2026 blueBell Village
  • Show Website
    The Dementia Collective

You Might Also Like