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The Dementia Collective Podcast

The Dementia Collective is a place for caregivers, families, and anyone impacted by dementia to find clarity, support, and hope. Each episode features real conversations with people who are shaping the world of dementia care: caregivers, clinicians, researchers, and community leaders who bring practical insight and lived experience.

The show also highlights those working alongside the dementia community through advocacy, awareness, endurance challenges, and innovative projects. From marathoners raising research funding to founders building new care models, these voices expand the conversation and show what meaningful impact can look like from many directions.

Whether you’re navigating daily care, searching for trustworthy guidance, or looking for inspiration from people making a difference, The Dementia Collective gives you grounded advice and stories that help you feel less alone

We say it often, but it’s true. It takes a village!

We are truly grateful for our supporters who have put their faith in us, and want to help us grow. You can those member of The Village here on our Wall of Appreciation. 

If you would like to join them in The Village, and help us reach more families, you can support the podcast here

Find The Dementia Collective anywhere you get your podcasts!

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YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC45NkYyMUU2ODY3QTU0OTgz 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 family * How Leni was diagnosed with Sanfilippo syndrome Type B * Why childhood dementia can be so difficult to diagnose * What Sanfilippo can mean for a child’s development * Why early diagnosis matters * The fragmented system families are expected to navigate * The impact caregiving and advocacy can have on work and family life * Why Emily believes childhood dementia needs greater recognition * The clinical trials offering families hope for potential treatments * Why funding remains such a major challenge in rare disease research * How sharing Leni’s story has created awareness around the world * What 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 https://a.co/d/00Nh3PGn (Saving Leni Book on Amazon) ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Introduction to Emily Forrester and Lenny 02:57 The prevalence of childhood dementia and San Filippo 03:10 Challenges in accessing treatment for San Filippo 05:14 Who is Leni? A glimpse into her life 07:49 The initial signs and diagnosis process for Sanfilippo syndrome 10:44 Testing for childhood dementia 12:21 Genetic testing and enzyme levels in San Filippo 12:26 Impact of social media in raising awareness 13:33 The challenges of support and systemic barriers 15:05 The importance of early diagnosis and parental support 19:01 The typical disease trajectory and future outlook 19:43 The impact of early detection 23:41 The impact of diagnosis delays and misdiagnosis 25:36 How rare is childhood dementia? 28:06 Childhood dementias 29:47 Emily's advocacy work and raising awareness 37:57 Obvious symptoms of Sanfilippo syndrome 39:21 Navigation supports through the healthcare system 42:05 Educational supports and expectations 52:07 Family life and managing care amidst chaos 55:46 Media exposure for Leni 01:01:21 How San Filippo has changed Emily as a mother 01:03:38 Balancing career, advocacy, and family 01:06:00 Community support and the importance of awareness 01:29:33 Lightning Round 01:32:02 Leni's best moment 01:37:04 Casting Leni's Movie ——— 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) | EP50
September 23, 2026 9:30 pm
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 family * How Leni was diagnosed with Sanfilippo syndrome Type B * Why childhood dementia can be so difficult to diagnose * What Sanfilippo can mean for a child’s development * Why early diagnosis matters * The fragmented system families are expected to navigate * The impact caregiving and advocacy can have on work and family life * Why Emily believes childhood dementia needs greater recognition * The clinical trials offering families hope for potential treatments * Why funding remains such a major challenge in rare disease research * How sharing Leni’s story has created awareness around the world * What 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 https://a.co/d/00Nh3PGn (Saving Leni Book on Amazon) ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Introduction to Emily Forrester and Lenny 02:57 The prevalence of childhood dementia and San Filippo 03:10 Challenges in accessing treatment for San Filippo 05:14 Who is Leni? A glimpse into her life 07:49 The initial signs and diagnosis process for Sanfilippo syndrome 10:44 Testing for childhood dementia 12:21 Genetic testing and enzyme levels in San Filippo 12:26 Impact of social media in raising awareness 13:33 The challenges of support and systemic barriers 15:05 The importance of early diagnosis and parental support 19:01 The typical disease trajectory and future outlook 19:43 The impact of early detection 23:41 The impact of diagnosis delays and misdiagnosis 25:36 How rare is childhood dementia? 28:06 Childhood dementias 29:47 Emily's advocacy work and raising awareness 37:57 Obvious symptoms of Sanfilippo syndrome 39:21 Navigation supports through the healthcare system 42:05 Educational supports and expectations 52:07 Family life and managing care amidst chaos 55:46 Media exposure for Leni 01:01:21 How San Filippo has changed Emily as a mother 01:03:38 Balancing career, advocacy, and family 01:06:00 Community support and the importance of awareness 01:29:33 Lightning Round 01:32:02 Leni's best moment 01:37:04 Casting Leni's Movie ——— 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. 1:44:50
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC45NkYyMUU2ODY3QTU0OTgz

Childhood Dementia: A Family's Journey to Save Their Daughter (with Emily Forrester) | EP50

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 be What actually makes a park dementia inclusive The principles of design Why walking loops, wayfinding, familiar design, and accessible pathways matter The role of intergenerational spaces in reducing dementia stigma How philanthropy and community partnerships brought the project to life How the park will be used for programming and future research How 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 ——— 00:28 Introduction to the Dementia Park Initiative 03:42 Understanding Dementia Inclusive Parks 05:50 Catalysts for Change: The Role of Alzheimer Calgary 08:57 Designing for Accessibility and Safety 11:41 Funding and Community Support 14:37 Engaging the Community: Intergenerational Connections 17:41 Incorporating Indigenous Perspectives 20:39 Programming and Utilization of the Park 23:20 Navigating Seasonal Challenges 29:16 Designing for Dementia: The Four Pillars 35:06 Cost Considerations for Dementia-Inclusive Parks 37:28 Lived Experience: Impact on Project Development 43:56 Defining Success: Community Impact and Feedback 48:37 The Future of Dementia-Inclusive Parks 50:01 Advice for Municipalities: Embracing Community Needs ——— 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. 56:14
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5FRDI4QjBEMTcwNTJEMzZG

Inside Canada's First Dementia-Inclusive Park | EP49

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. IIn this episode: * Valerie’s family experience with Alzheimer’s disease and vascular dementia * The difference between living with dementia and suffering from dementia * Why dementia can look different for every family * How Eugeria identifies and tests products for people living with dementia * Why dementia technology should support independence, not just monitor people * How cognitive aids can help people remain at home longer * The potential for AI to compensate for cognitive changes * Why children should be included in the lives of people living with dementia * The importance of intergenerational communities * Why Valerie believes there can still be joy and quality of life with dementia * How 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 ——— 00:00 Valerie Larochelle 02:54 Valerie shares her personal experience with vascular dementia in her family 04:21 The importance of product vetting and quality control 06:10 Understanding the stability and progression of vascular dementia 08:02 Curated product selection versus mass-market platforms 09:08 The impact of early exposure to aging and dementia in childhood 12:18 The importance of community and intergenerational spaces for aging 13:19 Role of AI in personalized cognitive support 15:59 How society currently supports or neglects dementia and elder care 18:11 Expanding product categories to neurodiversity and aging 21:17 Valerie discusses her motivation and the founding of Eugeria 23:15 Innovative products like smart pill dispensers and adapted phones 26:22 The evolution of Eugeria’s product focus and innovation in dementia care 28:14 Addressing unmet needs in dementia and neurodiversity 31:00 The societal and systemic challenges in supporting caregivers 36:04 Valerie’s background and how her international experience shaped her vision 38:12 Personal reflections on caregiving and the human aspect 41:10 The macro trends in aging populations and future opportunities 43:06 Advice for caregivers 46:11 The importance of community-based, intergenerational support models 50:58 How to evaluate and implement effective dementia care products 56:03 Valerie’s advice for future entrepreneurs in elder care 01:01:10 Closing thoughts on aging, innovation, and societal change 01:17:27 Lego and Dementia 01:20:57 Leadership Perspectives 01:24:53 What if you develop a dementia? 01:28:09 Closing thoughts ——— Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use. 1:29:24
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4xMTFCRDgyODkzQThBMEM3

Building a Better World for Dementia (with Valerie Larochelle) | EP48

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 pancreatic 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 • What Lisa would do if she were diagnosed with dementia tomorrow • 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 • The reality of caregiver guilt and second-guessing • 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 ——— 00:00 Navigating Conversations About Dementia 09:24 The Importance of Early Conversations 19:27 Personal Experiences with Caregiving 29:19 Lessons Learned from Caregiving 39:19 Understanding Hospice Care 48:27 Navigating Hospice Fraud and Quality Concerns 01:00:42 The Importance of Open Conversations about Death 01:17:04 Impact of the Death Deck and End-of-Life Tools 01:20:27 Lightning Round 01:23:35 Adventures in Water: Swimming with Sharks 01:31:10 The Reality Behind Reality TV 01:34:20 The Dementia Deck Questions 01:37:33 Finding Hope in Humanity ——— Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use. 1:40:37
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC45NjFBMjIyRUI0QzhCQzgz

Why I Wish We Talked About Death Sooner (with Lisa Pahl) | EP47

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

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

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

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

What happens when someone whose life has been built around words is forced to watch the person they love slowly lose the ability to find them? In this episode, Andrew Karesa sits down with Dr. Cindy Weinstein, the Eli and Edythe Broad Professor of English at Caltech, Atlantic Fellow for Equity in Brain Health, and co-author of Finding the Right Words. Together, they explore her father’s journey with early-onset Alzheimer’s disease, the grief that followed, and how decades later she finally found the words to tell his story. Cindy shares the early signs that something was changing, the heartbreak of watching her father struggle to retrieve everyday words, and why a simple grocery store trip searching for the word “croutons” became the story that inspired her memoir. She reflects on caring for her father from across the country, writing him letters she knew he could no longer read, and the guilt that often accompanies long-distance caregiving. The conversation also explores how language influences the way we think about dementia. From terms like “battle” and “agitation” to the importance of speaking directly to a person living with dementia, Cindy explains why the words we choose have consequences for dignity, stigma, and care. Perhaps most moving is her reflection on writing the book itself. Years after her father’s death, she realized she hadn’t lost her memories of him, she had simply protected them because they were too painful to revisit. Writing became her way of remembering the healthy father she thought she had lost and, in her words, her own version of sitting Shiva. This is a conversation about Alzheimer’s disease, language, grief, caregiving, memory, family, and the extraordinary power of stories to preserve the people we love. In this episode: • The early signs of her father’s young-onset Alzheimer’s disease • How the logopenic variant of Alzheimer’s affects language and word finding • The unforgettable “crouton” story that inspired Finding the Right Words • Why she continued writing letters her father could no longer read • The emotional reality of long-distance caregiving • What she wishes she had known about communicating beyond words • The power of music, touch, animals, and shared experiences in dementia care • Why authenticity matters when telling caregiving stories • How literature helped her process grief and suffering • The language of dementia and why words like “battle” and “agitation” deserve more careful thought • Practical advice for caregivers seeking support and avoiding isolation • Why writing became an act of preservation and helped her recover memories of her father • What reaching the same age as her father’s diagnosis taught her about purpose, resilience, and hope Whether you’re living with dementia, supporting someone you love, working in healthcare, or simply trying to understand the human experience behind Alzheimer’s disease, this conversation is a reminder that even when words become harder to find, love, dignity, and connection can endure. Learn more at: https://www.bluebellvillage.ca https://www.professorcindy.com/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating the Language of Suffering 16:04 The Journey of Diagnosis and Caregiving 22:01 Navigating Graduate School and Family Crisis 25:08 The Burden of Caregiving from Afar 28:02 Vulnerability in Sharing Family Stories 33:10 Sibling Dynamics in Caregiving 38:42 Understanding Alzheimer's Variants 42:17 The Crouton Story: A Metaphor for Communication Loss 49:42 Advice for Caregivers: Learning from Experience 52:55 Finding Support and Resources for Caregivers 58:03 Preserving Memories Through Writing 01:04:44 The Emotional Journey of Writing a Memoir 01:06:32 Understanding Grief and Guilt in Caregiving 01:08:49 The Role of Literature in Explaining Dementia 01:10:40 Reflections on Aging and Life Choices 01:13:31 The Importance of Language in Dementia Care 01:21:48 Finding Humor Amidst Grief 01:25:15 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:33:00
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When Words Fail, Stories Heal in Dementia Care (with Dr. Cindy Weinstein) | EP44

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. Together, Andrew and Sam explore stigma, independence, community, caregiving, advocacy, the role of theatre in changing minds, and what it means to remain fully human through every stage of life. This is a conversation about Alzheimer’s, dignity, autonomy, purpose, love, and the urgent need to reframe how society sees people living with dementia. In this episode: • Sam’s lifelong work as a consumer advocate and public-interest leader • How Alzheimer’s became the subject of his second play, Dementia Man • 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 ——— 00:00 Navigating Stigma and Public Perception 08:34 Sam's Journey and Background 10:15 Early Life and Family Dynamics 17:44 Advocacy Through Art and Theater 29:38 Experiencing Cognitive Changes 37:54 Family Support and Future Planning 42:49 Embracing Life's Journey 46:58 Finding Meaning in Community 47:27 Engaging the Mind in Later Life 52:01 Theater as a Tool for Connection 57:45 Living Joyfully with Dementia 59:20 The Format of DementiaMan 01:04:30 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:17:40
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Reframing Dementia: The Case Against Assisted Dying (with Samuel Simon) | EP43

What does it mean to care for someone with dignity when culture, language, family, and personal identity are often overlooked? In this episode, Andrew Karesa sits down with Varsha Bhat, business and innovation leader, caregiver advocate, Vice-Chair of the Alzheimer Society of Montreal, and host of the Aging With Dignity podcast. Varsha shares how her mother’s dementia diagnosis and her father’s sudden cardiac decline changed the course of her life. While continuing to work and manage her own responsibilities, she helped coordinate home care, palliative care, medical decisions, and support for both parents. Together, Andrew and Varsha explore why dignity is personal, why cultural competency matters in dementia care, and why completing tasks is not the same as truly caring for someone. They also discuss the role of community, the challenges faced by first-generation immigrant families, caregiver burnout, family privacy, and the pressure to make every decision correctly. This is a conversation about dementia, culture, caregiving, grief, compassion, and the importance of seeing the person behind the diagnosis. In this episode: • Varsha’s journey from daughter to caregiver • Her mother’s corticobasal degeneration diagnosis • Caring for both parents at the same time • Cultural competency in dementia and eldercare • Why dignity means something different to every person • The role of community in supporting caregivers • Navigating home care and palliative care • Why caregivers cannot do everything alone • Accepting that caregiving decisions will not always be perfect • How Varsha’s experience inspired Aging With Dignity Whether you are a caregiver, healthcare professional, or family member, this conversation offers an honest look at what dignified care requires and why compassion must remain at the centre of it. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://agingwithdignity.podbean.com/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Aging with Dignity: The Caregiver's Role 10:42 Navigating Nonverbal Communication in Caregiving 20:13 Personal Journey: From Daughter to Caregiver 30:16 Community Support: The Role of Cultural Connections 40:18 Breaking Stigmas: Normalizing Conversations Around Dementia 45:28 Navigating Grief and Career Transition 48:36 Aging in Place and Palliative Care Advocacy 49:16 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:3:28
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Why Dignity in Care Looks Nothing Like You Think (with Varsha Bhat) | EP42

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 • Truth-telling, validation, and therapeutic fibbing • Why caregiver burnout should be viewed through the lens of stewardship • The hidden impact of family history and relationships • How churches can better support dementia families • Cultural expectations around caregiving • Why people living with dementia never lose their value • Why caregiving was never meant to be done alone Whether you are a caregiver, a healthcare professional, a member of a faith community, or simply trying to better understand dementia, this conversation offers a thoughtful perspective on caring for others while remembering the dignity and humanity that remain throughout the journey. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://www.dignicarebydesign.com/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating Truth and Validation in Dementia Caregiving 03:19 Emotional Sensitivity and Caregiver Dynamics 06:27 Managing Expectations in Caregiving 09:18 The Journey into Dementia Caregiving 12:07 The Influence of Personal Experience on Caregiving 14:56 The Impact of Family Dynamics on Caregiving 17:53 The Challenges of Family Caregivers vs. Professionals 20:50 Understanding the Value of Individuals with Dementia 23:53 The Role of Faith in Caregiving 26:57 The Importance of Personal History in Caregiving 29:58 The Influence of Grandparents on Caregiving Perspectives 32:53 The Path to Occupational Therapy and Dementia Care 35:55 Biblical Worldview vs. Modern Dementia Care 38:51 Therapeutic Truth-Telling in Dementia Care 41:48 Navigating Caregiving Across Different Beliefs 48:19 Navigating Caregiving with Faith 51:41 The Role of the Church in Caregiving 56:17 Stewardship and Sacrificial Love in Caregiving 01:01:28 Cultural Perspectives on Caregiving 01:05:45 Lightning Round and Personal Insights ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:16:46
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When Caregiving Becomes Stewardship (with Lizette Cloete) | EP41

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, and Phyllis Fehr: “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 ——— 00:00 Diagnosed with Dementia. Now What? 00:17 Michael Booth | Author of 'Forget Me Not: The Letter in the Headboard' 05:43 Samuel Simon | Dementia Man 07:38 Phyllis Fehr | Co-Author of 'How to Live Well with Dementia' 14:43 Jim Mann | Canada's Leading Voice on Dementia Stigma ——— 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. 19:23
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Ask the Experts: What Comes After a Dementia Diagnosis?

What happens when the people holding the care system together start to break? In this episode, Andrew Karesa sits down with Stephanie Muskat, an award-winning registered clinical social worker, psychotherapist, caregiver advocate, and founder of Compassion in Caregiving, to explore the emotional, practical, and systemic realities of caregiving. Stephanie shares her story of becoming a caregiver at 19, when her mother began showing signs of what was later diagnosed as frontotemporal dementia. As an only child, she was suddenly navigating doctors, specialists, hospitals, discharge planning, and family dynamics while trying to build her own life. Together, Andrew and Stephanie discuss what caregivers carry that often goes unseen: guilt, anger, burnout, resentment, grief, and the pain of family members who do not show up. They also explore why caregivers are often treated as a “given” in the healthcare system, despite holding so much of it together. Stephanie challenges the label of the “difficult caregiver” and explains why advocacy is often misunderstood when families are trying to protect someone they know best. She also reflects on young caregiving, children and dementia, cultural expectations, caregiver mental health, and why dementia should not be hidden from family life. This is a conversation about caregiving, family, burnout, advocacy, guilt, grief, and the urgent need to stop treating caregivers as invisible background support. In this episode: • Becoming a caregiver at 19 • Why frontotemporal dementia can be hard to recognize • When family members do not show up • The harm of calling someone a “difficult caregiver” • How unpaid caregivers hold the system together • Why anger can be a sign of burnout • The guilt of choosing between caregiving and your own life • Why children should not automatically be hidden from dementia • How culture and family expectations shape caregiving • Why caregivers need more than awareness and good intentions Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or loved one living with dementia, this conversation is a reminder that caregivers are people too. They are not a given. And they should not have to break before anyone notices they need help. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://compassionincaregiving.com/ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating Family Dynamics in Caregiving 03:49 The Impact of Caregiving on Relationships 06:55 Stephanie's Journey into Caregiving and Social Work 09:32 Challenges in the Healthcare System 12:41 The Role of Young Caregivers 15:27 Advocacy and the Need for Support 18:38 The Importance of Quality Care 21:23 Building a Caregiving Practice 24:47 The Future of Caregiving Support 28:53 Unpacking Caregiving Challenges 30:46 Fragmented Healthcare Systems 33:28 The Caregiver's Burden 35:26 The Impact of Caregiving on Health 37:34 Cultural Shifts in Caregiving 39:45 Normalizing Caregiving for Future Generations 41:58 The Role of Caregivers in Society 50:05 Indigenous Perspectives on Caregiving 53:33 Navigating Caregiver Challenges 56:13 Cultural Sensitivity in Caregiving 58:40 The Role of Caregiver Compass 59:26 The Emotional Landscape of Caregiving 01:03:48 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:14:37
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Caregivers Are Not a Given: Why the System Is Breaking (with Stephanie Muskat) | EP40

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. Katie explains how diagnosis helped her understand that Mike had not chosen to leave their family. The disease had taken him away. The conversation also explores one of the hardest realities many caregivers face: when home is no longer the safest place. Katie speaks honestly about the guilt, grief, and gratitude that came with moving Mike into a skilled nursing facility, and why care placement should not be understood as failure. Sometimes love means recognizing that one person cannot safely carry everything alone. Andrew and Katie also talk about caregiver burnout, the financial and emotional cost of care, the need for better navigation and support, and why caregivers need to be seen as essential members of the care team. Katie shares practical advice for families newly facing a diagnosis, including who to tell, how to begin legal and financial planning, and why connecting with trusted advocacy organizations matters. 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 • The difference between FTD and Alzheimer’s disease • 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 • Why care placement is not failure • How diagnosis gave Katie back her love story with Mike • What caregivers need to know after a diagnosis • Why caregiver wellbeing directly affects the person living with dementia • 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 dies Whether 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.ca https://www.katiebrandt.org https://www.ftdboston.org ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Navigating Caregiving Challenges 10:14 The Emotional Toll of Caregiving 19:10 Understanding Dementia: FTD vs. Alzheimer's 29:15 The Importance of Advocacy in Caregiving 53:20 The Isolation of Caregiving 56:02 Noah's Journey to Advocacy 59:31 Understanding Dementia and Its Impact 01:00:57 Planning for Brain Health 01:03:11 Navigating a New Diagnosis 01:06:57 The Importance of Community Support 01:09:53 Advocacy and Its Impact 01:11:19 The Role of Public Figures in Dementia Awareness 01:14:56 The Challenges of Caregiving 01:19:54 The Ongoing Need for Support 01:21:46 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:33:49
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Dementia Before 30: When FTD Changes Everything (with Katie Brandt) | EP39

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. 16:57
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What a Dementia Village Actually Looks Like (And Why We Don't Have More)

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, who lived with Alzheimer’s for 16 years, and how that experience shaped her 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. Together, Andrew and Susie discuss what it means to tell a dementia story with dignity. How much should be shared? Where is the line between honesty and exploitation? And how can filmmakers show the truth of dementia without reducing someone to their diagnosis? 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 • How music helped reconnect Susie’s mother to herself • 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 reform Whether 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.ca⁠⁠⁠⁠⁠⁠⁠ ⁠https://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 ——— 00:00 Navigating Personal and Private Stories 05:40 The Impact of Caregiving on Family Dynamics 12:21 The Power of Music in Dementia Care 18:58 The Journey Through Long-Term Care Facilities 27:39 The Impact of Pharmaceutical Practices on Elderly Care 33:15 Systemic Issues in Nursing Homes 37:03 The Business Model of Care Facilities 43:00 The Consequences of Isolation During COVID-19 45:12 Impact of the Documentary 48:17 Challenges in Long-Term Care Facilities 51:05 The Birth of Love Conquers Alls Podcast 54:04 Changing Perspectives in Hollywood 57:14 Stigma and Authenticity in Storytelling 01:00:15 Personal Experiences and Empathy in Caregiving 01:03:20 The Importance of Kindness and Connection 01:10:58 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:23:20
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Inside the Broken System Destroying Elderly Lives (with Susie Singer Carter) | EP38

We recently learned of Cindy Diogo’s passing, and it felt important to acknowledge that here. Cindy was doing meaningful work for caregivers and families, and that comes through so clearly in this conversation. She brought insight, honesty, and a real sense of purpose to this topic, and we are grateful we had the chance to share her voice on The Dementia Collective. We know some of you may come across this episode and want to reach out to her or learn more about her work, so we wanted to add this note with care. We are holding her family, friends, and community in our thoughts. If you would like to support Cindy’s family, you can do so here: https://www.gofundme.com/f/cindy-diogokociuba ——— 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 home Whether 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.ca⁠ ⁠https://www.consoulapp.com⁠ ——— Join The Village and help shape conversations like this by submitting questions to our guests: ⁠https://www.patreon.com/cw/blueBellVillage⁠ ——— 00:00 Navigating Caregiver Support and Resources 05:46 Understanding Caregiver Rights and Accommodations 11:25 Cindy Diogo's Journey to Founding Consul 17:40 Ensuring Quality and Safety in Caregiving Services 45:57 Understanding Caregiver Data Privacy 51:28 Addressing Specific Needs of Dementia Caregivers 56:40 Policy Recommendations for Caregiver Support 01:02:18 Navigating Caregiving and Employment 01:07:23 Practical Recommendations for Organizations 01:13:12 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:20:30
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The Growing Pressure on Working Caregivers (with Cindy Diogo) | EP37

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 giveaway Whether 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 you Contest 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 ——— 00:00 Celebrating One Year of the Dementia Collective 02:53 The Journey of Creating the Podcast 05:47 Understanding the Evolution of the Show 08:23 The Art of Interviewing and Emotional Stories 11:22 Reflections on Personal Experiences and Regrets 14:10 Impactful Episodes and Guest Stories 17:19 Audience Feedback and Its Significance 20:01 Emotional Weight of Hosting 22:50 Lessons Learned About Dementia 26:00 Behind the Scenes of Podcasting 28:53 Navigating the Podcasting Landscape 35:18 Reflections on Planning and Expectations 38:05 Defining Success in Podcasting 39:37 Choosing Guests: The Selection Process 42:16 Interviewing Different Perspectives 45:31 Declining Unfit Guest Proposals 45:44 Finding Joy in Dementia Care 45:57 Balancing Work and Family Life 46:11 Addressing Indigenous Dementia Care 46:14 Advocating for Systemic Change 46:23 Lessons from the First Year of Podcasting 47:09 Building a Community of Experts 48:10 Connecting with Remarkable Individuals 49:40 Behind the Scenes: Editing and Bloopers 50:21 Aspirations for Year Two: Bigger Names and Impact 53:18 Highlighting Caregivers and Family Dynamics 56:18 The Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:7:25
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What a Year of Dementia Advocacy Taught Me (with Anoushka Fernandes) | EP36

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 understanding Whether 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.ca⁠⁠⁠⁠⁠⁠⁠ ⁠https://alfredobotello.com ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 The Caregiver's Journey: Humor and Guilt 05:45 Alfredo Botello: From Architecture to Storytelling 12:00 Navigating Family Dynamics: The Sibling Archetype 17:47 The Need for Authentic Conversations on Dementia 23:38 The Role of Humor in Caregiving 29:51 Hollywood's Portrayal of Dementia 35:47 The Importance of Open Dialogue in Caregiving 43:48 The Overwhelming Reality of Caregiving 52:53 Finding Compassion for Oneself 57:54 Impact on Relationships 01:04:00 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:13:17
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Who Tells the Story? Dementia, Hollywood, and Caregiving (with Alfredo Botello) | EP35

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 care Whether 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.ca⁠⁠⁠⁠⁠⁠⁠ ⁠https://alzheimersspeaks.com https://dementiamap.com ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Introduction and Recognition 02:54 The Impact of Recognition on Caregiving 06:07 Personal Journey with Dementia 08:55 The Role of Family in Caregiving 11:53 The Importance of Community Support 14:49 Starting a Movement: Memory Cafes and Inclusivity 17:27 Navigating the Healthcare System 20:46 The Evolution of Dementia Care 23:45 Creating Dementia-Friendly Communities 46:10 Building a Dementia-Friendly Community 47:45 The Importance of Sensory Care 50:20 Flexibility in Caregiving 52:16 The Role of Social Interaction 52:46 Changing Stigma Around Dementia 55:42 Navigating Medical Interactions 59:48 Challenges in Publicly Funded Organizations 01:03:54 The Need for Adaptability in Services 01:11:09 Introducing 'Betty the Bald Chicken' 01:20:39 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:27:10
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Why 30 Years of Dementia Caregiving Broke Every Assumption She Had (with Lori La Bey) | EP34

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. Together, Andrew and Karen explore what it means to “keep the peace” without sacrificing integrity, how to understand behaviour as communication, and why there is always a reason beneath what we see on the surface. 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 time Whether 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.ca⁠⁠⁠⁠⁠⁠⁠ ⁠https://dementiasolutions.ca⁠ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Introduction and Podcast Evolution 03:09 Navigating Caregiver Burnout and Support 05:55 Sibling Dynamics in Caregiving 09:02 Karen Tyrell's Journey into Dementia Care 11:56 The Importance of Education in Caregiving 14:48 Therapeutic Reasoning in Dementia Care 18:01 Understanding Sundowning and Its Causes 21:08 Creative Solutions for Managing Behaviors 23:47 The Role of Antipsychotics in Dementia Care 27:10 Therapeutic Reasoning in Action 29:50 Addressing Anosognosia in Caregiving 32:47 The Importance of Improv Skills for Caregivers 36:09 Finding Your Niche in Dementia Care 38:49 Changing Stigmas Around Dementia 44:51 The Evolution of Conversations Around Dementia 45:58 Building the Dementia Village 47:44 Designing for Person-Centered Care 49:54 The Importance of Personalization in Care 52:25 Language and Terminology in Caregiving 53:04 Creating Meaningful Activities for Dementia Patients 58:50 The Need for Updated Resources 01:00:12 Establishing a Certified Dementia Care Provider Program 01:05:28 Community Impact and Ongoing Support 01:06:52 Involvement of Family Members in Care 01:08:51 Lightning Round ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:16:32
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Anosognosia: Why They Don't Believe Anything's Wrong (with Karen Tyrell) | EP33

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