The Dementia Collective

Епизоди

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  Building a Better World for Dementia (with Valerie Larochelle) 16.09.2026 1ч 29мин

  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 agingThis 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.
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  The Letter in the Headboard: A Novel Born from Dementia (with Michael A. Booth) 02.09.2026 1ч 8мин

  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 uncertainWhether 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.ca⁠⁠⁠⁠https://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.
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  The Gift of Talking About Death Before It's Too Late (with Lisa Pahl) 09.09.2026 1ч 40мин

  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 intentionallyWhether 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.ca⁠⁠⁠⁠https://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.
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  Ask the Experts: What Comes After a Dementia Diagnosis? 23.07.2026 19мин

  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.
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  Five IRONMANs to Beat Alzheimer's (with Hassan Fadli) 26.08.2026 1ч 24мин

  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 beforeWhether 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.cahttps://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.
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  What a Dementia Village Actually Looks Like (And Why We Don't Have More) 13.07.2026 16мин

  In this bonus episode of The Dementia Collective, Andrew Karesa takes a close look at what a dementia village actually is — and why, despite decades of evidence that they work, Canada has yet to build one at scale.The video begins with a simple number: more than 400 Canadians are diagnosed with dementia every day. By 2050, that number is projected to reach 1.7 million. Andrew uses that as a starting point to ask a harder question — not just how we will care for people, but whether the systems we are building are actually designed for living.Drawing on the story of the Hogeweyk in Weesp, Netherlands — a secure neighbourhood for 188 residents with advanced dementia, operating since 2008 — Andrew walks through what person-centred design actually looks like in practice. He examines the research outcomes, the global spread of the model, and the alternative approach taken by the Restaurant of Mistaken Orders in Japan.He also doesn't sidestep the critiques. The constructed reality argument, the cost and equity problem, and the question of whether a better institution is still just an institution — all of it gets examined.The episode closes with a look at what is keeping this model from scaling in Canada: funding structures built around clinical interventions, building codes designed for acute care, and a workforce crisis that is already here. Drawing on data from the Alzheimer Society of Canada's Landmark Study, Andrew makes the case that the blueprint exists — and that what is missing is not knowledge. It is the belief that the final years of life deserve the same investment as any other.This episode is part of the ongoing blueBell Village conversation about person-centred care, caregiver support, and what it means to actually live well with dementia.—0:00 Understanding Dementia: A Growing Concern in Canada 3:43 Design Principles of a Dementia Village 7:14 The Dementia Village Model: A New Approach 8:18 Ethical Considerations and Critiques 12:28 The Future of Dementia Care: A Call to Action 13:59 Implementation Challenges—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: 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.
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  When Words Fail, Stories Heal in Dementia Care (with Dr. Cindy Weinstein) 19.08.2026 1ч 32мин

  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 hopeWhether 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.cahttps://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.
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  Reframing Dementia: The Case Against Assisted Dying (with Samuel Simon) 12.08.2026 1ч 17мин

  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 futuresWhether 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.cahttps://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.
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  Why Dignity in Care Looks Nothing Like You Think (with Varsha Bhat) 05.08.2026 1ч 3мин

  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 DignityWhether 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.ca⁠⁠⁠⁠⁠⁠⁠https://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.
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  When Caregiving Becomes Stewardship (with Lizette Cloete) 29.07.2026 1ч 16мин

  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 aloneWhether 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.ca⁠⁠⁠⁠⁠⁠⁠https://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.
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  Caregivers Are Not a Given: Why the System Is Breaking (with Stephanie Muskat) 22.07.2026 1ч 14мин

  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 intentionsWhether 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.ca⁠⁠⁠⁠⁠⁠⁠https://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.
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  What a Year of Dementia Advocacy Taught Me (with Anoushka Fernandes) 24.06.2026 1ч 7мин

  What can one year of dementia conversations teach us about care, stigma, grief, advocacy, and hope?In this special one-year anniversary episode of The Dementia Collective, Andrew Karesa steps out of the interviewer’s chair and becomes the guest. Joined by guest host Anoushka Fernandes, Andrew reflects on how the show began almost by accident, what it has grown into, and what a year of conversations with caregivers, people living with dementia, researchers, advocates, clinicians, authors, and public voices has taught him.Together, Andrew and Anoushka look back on the moments that shaped the show, from the first caregiver support webinar to the powerful stories that changed how Andrew thinks about dementia, personhood, stigma, family, grief, regret, and hope.They also go behind the scenes of The Dementia Collective, including the emotional weight of listening to deeply personal caregiving stories, the work that goes into producing the show, and where Andrew hopes to take it in year two.In this episode:• How The Dementia Collective began by accident• What Andrew has learned from caregivers, experts, and people living with dementia• The stories and guests that stayed with him most• Why dementia stigma remains so harmful• The emotional weight of hearing caregiving stories• What goes into producing the show behind the scenes• Where Andrew hopes to take The Dementia Collective in year two• A special lightning round with Anoushka• Details on the one-year birthday giveawayWhether you have followed from the beginning or this is your first episode, this conversation is a reflection on why these stories matter and why no caregiver, family, or person living with dementia should feel alone.Birthday Giveaway:To celebrate one year of The Dementia Collective, we’re giving away a special prize to one member of our community.To enter:• Subscribe to The Dementia Collective wherever you watch or listen to the show• Like this episode• Comment with the phrase “Remember the Person”• Share one episode, moment, guest, or topic from TDC that stayed with youContest closes July 8, 2026 at 11:59 PM MST. The winner will be contacted by the official blueBell Village account.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———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.
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  Dementia Before 30: When FTD Changes Everything (with Katie Brandt) 15.07.2026 1ч 33мин

  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 diesWhether 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.cahttps://www.katiebrandt.orghttps://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.
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  Inside the Broken System Destroying Elderly Lives (with Susie Singer Carter) 08.07.2026 1ч 23мин

  What if Hollywood’s dementia problem is not just what it shows, but what it leaves out?In this episode, Andrew Karesa sits down with filmmaker, writer, director, producer, and caregiver advocate Susie Singer Carter to explore dementia, storytelling, long-term care, and the responsibility that comes with representing people who are too often misunderstood.Susie shares the story of caring for her mother, Norma, how her experience shaped the Oscar-qualified short film My Mom and the Girl. The film was inspired by one extraordinary night in her mother’s life, a night filled with confusion, music, humour, tenderness, and unexpected connection.The conversation also moves into Susie’s documentary series No Country for Old People, which was born from her mother’s final months in long-term care. After her mother suffered neglect in a highly rated facility, Susie began uncovering a much larger crisis around staffing, accountability, ageism, and the way vulnerable residents can disappear inside broken systems.Andrew and Susie also examine dementia representation in Hollywood. They discuss why some portrayals feel authentic, why others can mislead, and how aging is too often turned into a caricature. Susie challenges the entertainment industry to tell better stories, not just more dramatic ones.This is a conversation about caregiving, advocacy, stigma, film, and the fight to keep people with dementia visible, valued, and human.In this episode:• How Susie’s caregiving journey shaped My Mom and the Girl• Why ethical storytelling matters in dementia representation• The line between honesty and exploitation• What Hollywood gets wrong about aging and dementia• Why some dementia stories can reinforce stigma• The long-term care crisis behind No Country for Old People• How neglect, understaffing, and ageism shape care• Why caregivers need better information before crisis moments• How storytelling can expose harm, preserve dignity, and push for reformWhether you are a caregiver, advocate, filmmaker, healthcare worker, or someone trying to understand dementia beyond stereotypes, this conversation asks us to look more carefully at the stories we tell, the people we overlook, and the systems we allow to continue.Learn more at:⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠https://www.gogirlmedia.com/My Mom and The Girl: https://vimeo.com/266772460———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.
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  The Growing Pressure on Working Caregivers (with Cindy Diogo) 01.07.2026 1ч 20мин

  In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Cindy Diogo⁠, CEO and Co-Founder of ConSoul, to explore what it means to support employees who are caring for a loved one living with dementia. Drawing on her background in HR and People & Culture, as well as her own family caregiving journey, Cindy reflects on the growing reality that more families are trying to navigate dementia care while still holding down a job.  Together, Andrew and Cindy talk about the specific pressures dementia creates for working caregivers. They discuss the long arc of increasing care needs, the challenge of coordinating appointments and support, the emotional strain of watching a loved one decline, and the reality that many people are trying to manage all of it quietly while remaining “productive” at work.  Cindy also shares how her own family experiences, including her grandmother’s advanced vascular dementia, shaped her understanding of care and helped lead her to build ConSoul. The conversation explores what employers often miss about dementia caregiving, why flexibility matters, and how current systems still leave too many families feeling unsupported and alone.  This is a conversation about dementia, work, and the invisible weight so many caregivers carry every day.In this episode:• What makes dementia caregiving different in the workplace• Why increasing care needs create growing pressure on families• How Cindy’s family experience with dementia shaped her work• What employers often misunderstand about dementia caregivers• Why flexibility matters for families navigating appointments and care• What resources caregivers may already have access to• Why many caregivers still hide their reality at work• What needs to change as more families face dementia at homeWhether you are supporting someone living with dementia, trying to balance care with work, or wanting to build better systems around families, this episode offers an honest look at what caregivers are carrying and what real support can look like.Learn more at:⁠https://www.bluebellvillage.ca⁠⁠https://www.consoulapp.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.
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  Who Tells the Story? Dementia, Hollywood, and Caregiving (with Alfredo Botello) 17.06.2026 1ч 13мин

  What if dementia is not only a medical condition, but a story shaped by who gets to tell it?In this episode, Andrew Karesa sits down with novelist and screenwriter Alfredo Botello to explore caregiving, storytelling, and the power of representation.Alfredo shares his experience caring for his mother and how that journey influenced his writing. From the private realities of family caregiving to the public portrayals of dementia in film and media, the conversation examines the tension between lived experience and cultural narrative.Together, Andrew and Alfredo ask a deeper question: who controls the story of dementia, and how does that shape how society responds to it?They discuss humor and heartbreak, the emotional contradictions of caregiving, and the responsibility that comes with writing about cognitive change. Alfredo reflects on how storytelling can either flatten people into stereotypes or preserve their complexity.The conversation also moves into the gap between what families experience and what audiences are shown. What gets dramatized? What gets softened? What gets left out entirely? And how does that influence stigma, understanding, and policy?Along the way, they consider how stories can restore dignity, challenge assumptions, and give caregivers language for what often feels impossible to explain.In this episode:• How caregiving reshaped Alfredo’s understanding of story• The difference between lived experience and public portrayal• Why humor matters in dementia conversations• The tension between vulnerability and representation• How media influences stigma and perception• What families wish more people understood• The responsibility of writers telling dementia stories• Where storytelling can help, and where it can harm• How narrative control shapes cultural understandingWhether you are a caregiver, a storyteller, or someone trying to understand dementia beyond headlines and tropes, this conversation invites you to reconsider not just what the story is, but who is telling it.Learn more at:⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠https://alfredobotello.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.
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  Why 30 Years of Dementia Caregiving Broke Every Assumption She Had (with Lori La Bey) 10.06.2026 1ч 27мин

  What happens when a family is left to navigate dementia without clear guidance or support?In this episode, Andrew Karesa sits down with Lori La Bey, founder of Alzheimer’s Speaks, to explore what a decades-long caregiving journey reveals about the realities of dementia care.Lori supported her mother through a 30-year experience with dementia. What began as confusion and uncertainty became a lifelong commitment to understanding care, building community, and creating space for voices that were often missing from the conversation.She shares what those early years looked like, what families are often not prepared for, and why so much of caregiving happens outside of formal systems. Lori reflects on the gap between diagnosis and real support, the role of community in navigating that gap, and how her work has helped reshape how caregivers connect, learn, and support one another.This conversation moves beyond theory. It focuses on what caregiving actually looks like over time, and what it takes to support someone while adapting to constant change.In this episode:• What a 30-year dementia journey reveals about caregiving• The gap between diagnosis and meaningful support• Why families often feel like they are figuring it out on their own• How community-based models like memory cafés are changing care• The role of lived experience in shaping better support systems• How dementia conversations have evolved over time• Why connection matters as much as clinical careWhether you are caring for a loved one, supporting someone through a diagnosis, or working in the dementia space, this episode offers a grounded look at what long-term caregiving really requires.Care doesn’t begin with a system. It begins with people finding their way forward, often before anyone shows them how.Learn more at:⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠https://alzheimersspeaks.comhttps://dementiamap.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.
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  Anosognosia: Why They Don't Believe Anything's Wrong (with Karen Tyrell) 03.06.2026 1ч 16мин

  What happens when correcting someone you love no longer brings clarity, and may actually increase distress?In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Karen Tyrell⁠, founder and CEO of ⁠Personalized Dementia Solutions⁠, to explore one of the most common and misunderstood challenges in dementia care: the instinct to correct.With more than 30 years of experience supporting families and frontline care teams, Karen explains why arguing often backfires, what anosognosia really means, and why some individuals genuinely do not believe anything is wrong. She unpacks how dementia changes insight, reasoning, and perception, and why logic alone is rarely enough.Karen introduces the concept of therapeutic reasoning and walks through practical steps caregivers can use to reduce escalation while preserving dignity. She shares how small shifts in language can prevent repeated emotional harm, how to navigate difficult moments like repeated questions about a deceased spouse, and why medications should not be the first response to agitation.The conversation moves beyond tactics. Karen reflects on stigma over the decades, how dementia care has evolved, and why families should build support early rather than waiting for crisis. She also speaks about her work developing dementia designation programs and creating accessible education that empowers both professionals and unpaid caregivers.In this episode:• Why correcting someone living with dementia often increases distress• What anosognosia is and how it changes conversations• The difference between honesty and therapeutic reasoning• How to respond when someone repeatedly asks about a deceased loved one• Why agitation is communication, not defiance• When medications should and should not be considered• How to build support before burnout sets in• What preserving dignity looks like in real timeWhether you are caring for a parent, supporting a spouse, working in long-term care, or trying to understand a recent diagnosis, this episode offers grounded guidance for navigating one of dementia care’s most difficult realities.You cannot win an argument with dementia. But you can change how you respond.Learn more at:⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠https://dementiasolutions.ca⁠———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.
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  Where’s the Plan for Dementia Care in Canada? (with Dr. Saskia Sivananthan) 06.05.2026 1ч 11мин

  What if the problem isn’t whether Canada has a dementia strategy, but whether families can actually feel it?In this episode, Andrew Karesa sits down with Dr. Saskia Sivananthan to examine the gap between Canada’s National Dementia Strategy and the lived reality of families, clinicians, and communities trying to navigate brain change.Drawing on her experience working at the intersection of research, policy, and national coordination, Dr. Sivananthan unpacks what strategy is supposed to do, where implementation breaks down, and how funding decisions shape what support is actually available on the ground. Together, Andrew and Saskia discuss federal leadership, provincial variation, accountability, and why a plan on paper does not automatically translate into coordinated care.The conversation moves beyond individual caregiving stories to ask a broader systems question: if we say we have a national plan, what would it look like for families to experience it as one?In this episode:• What Canada’s National Dementia Strategy was designed to accomplish• How funding shifts affect coordination and long-term impact• The difference between announcing a strategy and implementing one• Why fragmentation across provinces continues to shape care experiences• The role of accountability in national health initiatives• Where Canada lags and where it shows leadership globally• What meaningful national alignment in dementia care could actually look likeWhether you are a caregiver, policymaker, clinician, researcher, or someone trying to understand how dementia care is structured in Canada, this conversation offers a grounded look at the systems behind the support families depend on.Learn more at:⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠https://brainwellinstitute.orghttps://www.saskiasivananthan.comDisclaimer: 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.
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  18 Years with Alzheimer’s — Jim Mann, Canada’s Leading Voice on Dementia Stigma 13.08.2025 1ч 9мин

  What if receiving a dementia diagnosis wasn’t the end of the story — but the start of something new?In this episode, we meet Jim Mann, who was diagnosed with Alzheimer’s in 2007 and has spent the years since as a leading voice in dementia advocacy across Canada. With host Andrew Karesa, Jim reflects on how the diagnosis impacted his identity, why he didn’t feel devastated by the news, and what motivated him to step into public advocacy.Together, they explore how challenging stigma, staying connected, and focusing on contribution can shape a meaningful life — even with a progressive diagnosis.In this episode:• What Jim noticed before his diagnosis• Why hearing “you have Alzheimer’s” didn’t break him• How stigma affects people living with dementia• Why Jim chose to become an advocate• Strategies that support well-being over time• What he wants caregivers to understandWhether you’re living with dementia, supporting someone who is, or working in care, Jim’s story offers a grounded, hopeful perspective on what’s possible after diagnosis.Learn more at:www.bluebellvillage.caDisclaimer: 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.