The Dementia Collective

blueBell Village
  • 5.0 (12)
  • Mental Health
  • Updated Weekly

The Dementia Collective is a podcast hosted by Andrew Karesa, founder of blueBell Village, bringing together people living with dementia, caregivers, researchers, clinicians, and advocates from around the world. We share incredible stories, tackle difficult questions, challenge stigma, and shine a light on what needs to change in dementia care. Some conversations are heartbreaking, others are inspiring, and there’s plenty of room for laughter along the way. Because dementia is serious, that doesn’t mean every conversation about it has to be. Whether you’re living with dementia, supporting someone you love, or simply wanting to better understand Alzheimer’s and other dementias, The Dementia Collective is here to inform, support, and remind you that you’re not alone.

  1. 1d ago

    When Dementia Becomes a Family Secret (with Dr. Cecilia Chan)

    What happens when a dementia diagnosis becomes something a family feels it needs to hide? In this episode, Andrew Karesa sits down with Dr. Cecilia Chan, a Malaysian gerontologist and dementia care specialist, to explore the stigma surrounding dementia in Malaysia and how that stigma can affect not only the person diagnosed, but their entire family.  Cecilia shares stories of people avoiding diagnosis, families keeping dementia private, and the challenges of navigating a system with limited dementia-specific training and support. She also shares how her work is challenging these attitudes by creating spaces where people living with dementia can remain visible, included, and valued.  In this episode: Why some families keep dementia a secretHow stigma can discourage people from seeking a diagnosisWhat happens when families receive little support after diagnosisThe consequences of limited dementia trainingWhy dementia can lead to isolation from community and faith spacesHow the Forgotten Mutiara Cafe is challenging stigmaWhy Cecilia believes belonging and personhood must remain at the centre of dementia care This is a conversation about dementia, stigma, family, culture, faith, and what happens when fear of a diagnosis changes how people are treated. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://ceciliacwm.wordpress.com/ ——— 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.

    When Dementia Becomes a Family Secret (with Dr. Cecilia Chan)

  2. Oct 21

    Miss Canada Wants Dementia Taught in Schools (with Maura Jahangiri)

    What if learning about dementia started before a family ever had to face it? In this episode, Andrew Karesa sits down with Maura Jahangiri, Miss Canada 2026, and dementia advocate, to explore why she believes dementia education should begin with children and how her own experience with her grandfather changed the direction of her life. Maura was around 16 when her grandfather was diagnosed with Alzheimer’s disease. Having grown up with little understanding of dementia beyond memory loss, she remembers how frightening it was to watch his behaviour change and eventually see him move into long-term care. Maura shares her goal as Miss Canada 2026: bringing dementia education into elementary schools. She explains why she believes introducing children to dementia earlier could reduce fear and stigma, help families navigate a future diagnosis, and encourage a new generation to become involved in dementia care. In this episode: How Maura’s grandfather’s Alzheimer’s diagnosis shaped her advocacyWhat it was like experiencing dementia as a teenagerThe difficult decision to move her grandfather into long-term careWhy she started working with people living with dementiaWhat “The Power of Presence” means in dementia careWhy people living with dementia should never be treated like childrenWhat she has learned working in memory care and assisted livingHow music and meaningful activities can reach people living with dementiaWhy burnout and understaffing can affect the quality of careMaura’s push to bring dementia education into elementary schoolsHow Miss Canada has given her a platform to advocate for changeWhat dignity, autonomy, and respect should look like in dementia care This is a conversation about dementia, family, grief, education, dignity, and the power that simply showing up can have in another person’s life. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.instagram.com/powerofpresence_/ ——— 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.

    Miss Canada Wants Dementia Taught in Schools (with Maura Jahangiri)

  3. Oct 14

    The Bondi Lifeguard Taking on Dementia (with Andrew “Reidy” Reid)

    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 lifeguardThe real-life rescues behind Bondi RescueWhat more than 20 years of lifeguarding has taught him about patience and caregivingTrish’s early signs of dementia and eventual diagnosisWhat it feels like to mourn someone who is still aliveThe emotional difficulty of visiting a parent living in a nursing homeNavigating caregiving and complicated family relationshipsThe wild story behind running a 3:17 marathon carrying a surfboardBondi2Berry and raising money for dementia researchThis 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 ——— 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.

    The Bondi Lifeguard Taking on Dementia (with Andrew “Reidy” Reid)

  4. Oct 12 ·  Bonus

    Build With Us Not For Us: What Aging Well Really Looks Like (Part 2)

    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 CollectiveDr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of AlbertaJanice Baskin, Manager, Edmonton Regional Innovation NetworkKaren Murdock, Founder, Silver Longevity Business AssociationJay Pritchard, President, WE SeniorsZoran Kovacevic, entrepreneur and founder of Pace PetChief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services CriticIn this episode: What “Build With Us, Not For Us” actually meansWhy older adults need a voice in the technologies and services created for themWhy care is about more than technologyLoneliness, isolation, and rebuilding communityTurning research and innovation into real-world solutionsEntrepreneurship and designing alongside the people you serveIndigenous entrepreneurship and culturally appropriate care for EldersRethinking how we define and measure successful agingThis 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/ ——— 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.

    Build With Us Not For Us: What Aging Well Really Looks Like (Part 2)

  5. Oct 12 ·  Bonus

    Build With Us Not For Us: What Aging Well Really Looks Like (Part 1)

    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 CollectiveDr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of AlbertaJanice Baskin, Manager, Edmonton Regional Innovation NetworkKaren Murdock, Founder, Silver Longevity Business AssociationJay Pritchard, President, WE SeniorsZoran Kovacevic, entrepreneur and founder of Pace PetChief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services CriticIn this episode: What “Build With Us, Not For Us” actually meansWhy older adults need a voice in the technologies and services created for themWhy care is about more than technologyLoneliness, isolation, and rebuilding communityTurning research and innovation into real-world solutionsEntrepreneurship and designing alongside the people you serveIndigenous entrepreneurship and culturally appropriate care for EldersRethinking how we define and measure successful agingThis 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/ ——— 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.

    Build With Us Not For Us: What Aging Well Really Looks Like (Part 1)

  6. Oct 7

    She's Up At 2AM Because That's When Caregivers Need Her Most (with Katie Kristofic)

    What does caregiving look like when no one sees what you’re carrying? In this episode, Andrew Karesa sits down with Katie Kristofic, founder of The Carefullist, caregiver advocate, and former family caregiver, to explore the realities of supporting a loved one through Alzheimer’s disease and why she now spends her late nights helping caregivers who have nowhere else to turn. After caring for her mother through every stage of Alzheimer’s disease, Katie transformed her own experience into a mission to make caregiving less isolating. She shares the subtle signs that first made her realize something was wrong, the challenges her family faced as her mother’s condition progressed, and how her father’s quiet devotion shaped the way they navigated dementia together. Katie also reflects on balancing caregiving with a demanding corporate career, the unexpected challenges caregivers face in the workplace, and how those experiences ultimately led her to create The Carefullist. Together, Andrew and Katie discuss the hidden emotional weight of caregiving, the importance of meeting every person living with dementia where they are, the value of community, and why caregivers deserve far more support than they often receive. They also explore what happens after caregiving ends, how purpose can emerge from grief, and why helping others became part of Katie’s own healing. This is a conversation about Alzheimer’s disease, dementia, caregiving, family, grief, purpose, advocacy, and finding hope by helping others. In this episode: * How Katie first realized something was wrong with her mother * How her father cared for his wife at home with creativity and compassion * The challenges of balancing a career while caring for a parent * Why so many caregivers feel isolated and unsupported * How caregiving changed Katie’s purpose after her mother’s death * Why she created The Carefullist * The importance of finding community during and after caregiving * Practical advice for families beginning a dementia journey * Why Katie spends her nights supporting caregivers online Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or someone living with dementia, this conversation is a reminder that while caregiving can often feel lonely, you do not have to carry it alone. Sometimes the greatest source of hope is knowing that someone else understands exactly what you’re going through. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.carefullist.com ——— 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.

    She's Up At 2AM Because That's When Caregivers Need Her Most (with Katie Kristofic)

  7. Sep 30

    The Truth About Dementia Villages (with Eloy van Hal)

    What if the biggest problem with dementia care is not dementia, but the way we have designed care around it? In this episode, Andrew Karesa sits down with Eloy van Hal, co-founder of the Hogeweyk and senior managing advisor with Be Advice, to explore how one of the world’s most recognized approaches to dementia care grew from a traditional institutional nursing home into a neighbourhood built around normal life, autonomy, relationships, and personhood. Often described as the world’s first “dementia village,” the Hogeweyk began transforming dementia care more than 30 years ago. Together, Andrew and Eloy challenge conventional ideas about safety, locked doors, risk, independence, and what people living with dementia should be allowed to do. Eloy explains why everyday experiences like cooking with a knife, shopping for groceries, walking outside, meeting strangers, and choosing how to spend the day matter. He also shares why, if he were starting again today, he might not build a dementia village at all. Eloy also reflects on his own experience supporting his mother, who is living with dementia, and how being a family caregiver has shaped his perspective after decades of working professionally in dementia care. In this episode: How the Hogeweyk evolved from a traditional nursing homeWhy Eloy dislikes the term “dementia village”Why dementia care needs to rethink risk and safetyWhether people living with dementia should be free to leaveHow small group homes and shared lifestyles create comfortWhy everyday interactions and community matterWhat Eloy has learned caring for his own motherWhy leadership is essential to changing dementia careWhat Eloy would do differently if building the Hogeweyk todayThis is a conversation about dementia care, autonomy, dignity, risk, community, leadership, and a simple idea that people living with dementia should be seen people first Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.bethecareconcept.com/en/ https://hogeweyk.dementiavillage.com/ ——— 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.

    The Truth About Dementia Villages (with Eloy van Hal)

  8. Sep 23

    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)
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5
out of 5
12 Ratings

About

The Dementia Collective is a podcast hosted by Andrew Karesa, founder of blueBell Village, bringing together people living with dementia, caregivers, researchers, clinicians, and advocates from around the world. We share incredible stories, tackle difficult questions, challenge stigma, and shine a light on what needs to change in dementia care. Some conversations are heartbreaking, others are inspiring, and there’s plenty of room for laughter along the way. Because dementia is serious, that doesn’t mean every conversation about it has to be. Whether you’re living with dementia, supporting someone you love, or simply wanting to better understand Alzheimer’s and other dementias, The Dementia Collective is here to inform, support, and remind you that you’re not alone.

Information

  • Creator
    blueBell Village
  • Years Active
    2025 - 2026
  • Episodes
    70
  • Rating
    Explicit
  • Copyright
    © 2026 blueBell Village
  • Show Website
    The Dementia Collective

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