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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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The Dementia Collective | Listen Notes
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4xNEMzREYwQzc3REUwNDY0 What happens when someone who has spent his life rescuing people faces something he cannot rescue his own mum from? In this episode, Andrew Karesa sits down with Andrew “Reidy” Reid, longtime Bondi Rescue lifeguard, endurance athlete and dementia advocate, for an incredibly open conversation about lifeguarding, family, caregiving, grief, endurance sport, and his mum Trish’s journey with dementia. Reidy has spent more than 20 years as a lifeguard, becoming one of the familiar faces of Bondi Rescue. He has also completed more than 50 marathons, competed in Ironman triathlons, and even holds a Guinness World Record for running a marathon carrying a surfboard. But years before dementia became part of his own family, Reidy had already started using that endurance background to support dementia research through the 155-kilometre Bondi2Berry ride. Then his mum, Trish, was diagnosed with Alzheimer’s disease and vascular dementia. Reidy speaks candidly about watching his relationship with his mum change, stepping into a caregiving role, navigating difficult family dynamics, and eventually seeing his mum move into a nursing home. He describes the complicated grief of mourning someone who is still alive and the difficulty of leaving after a visit when his mum asks why she cannot come home with him. He also reflects on the things dementia has not taken away. Trish still remembers the words to the Elvis songs she played for her children growing up, and Reidy shares how music, old memories, family videos, puzzles and time with his children can still create moments of connection. The conversation also explores Reidy’s life beyond dementia, from growing up around Bondi and becoming a lifeguard to the beginnings of Bondi Rescue, extraordinary rescues, more than 50 marathons, Ironman racing, his 2:49 marathon, and the unlikely story behind his Guinness World Record marathon carrying a surfboard. In this episode: * Growing up around Bondi and how Reidy became a lifeguard * The real-life rescues behind Bondi Rescue * What more than 20 years of lifeguarding has taught him about patience and caregiving * Why Reidy started supporting dementia research before his mum was diagnosed * Trish’s early signs of dementia and eventual diagnosis * What it feels like to mourn someone who is still alive * The emotional difficulty of visiting a parent living in a nursing home * Navigating caregiving and complicated family relationships * Why music can still bring moments of connection with his mum * The memories of Trish that Reidy never wants to lose * Why running has become one of his most important coping mechanisms * More than 50 marathons, Ironman and breaking three hours in the marathon * The wild story behind running a 3:17 marathon carrying a surfboard * Bondi2Berry and raising money for dementia research * What Reidy wants other families navigating dementia and grief to know This is a conversation about much more than Bondi Rescue. It is about what happens when the person accustomed to being the rescuer becomes a son trying to navigate something he cannot fix. And through all of it, Reidy offers a simple message to other families living through dementia: be kind to yourself. You are navigating grief and doing the best you can. ——— 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 Andrew "Reidy" Reid 02:35 Lessons learned from lifeguarding: Patience and calmness 03:55 Reconnecting with people saved at Bondi Beach 05:33 A memorable rescue and reflection on mistakes 09:38 Bondi2Berry 17:19 Life growing up 19:12 Becoming a Bondi lifeguard 21:09 Andrew’s personal struggles and resilience 25:36 Andrew’s childhood, early life, and career path 26:37 Experiences with his mother’s dementia and caregiving challenges 35:39 Bringing children to visit the nursing home 39:43 Taking mum out for quality time 41:46 The importance of documenting family stories 50:40 First signs of dementia 01:00:56 Reflections on life, loss, and hope 01:05:32 World record race 01:12:43 IRONMAN Triathlons 01:22:47 Lightning Round 01:36:35 Bondi terrorist attack ——— This episode is brought to you by Eugeria. Check out their website for dementia products you can trust. ——— Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.
The Bondi Lifeguard Taking on Dementia (with Andrew “Reidy” Reid) | EP53
October 14, 2026 9:30 pm
What happens when someone who has spent his life rescuing people faces something he cannot rescue his own mum from? In this episode, Andrew Karesa sits down with Andrew “Reidy” Reid, longtime Bondi Rescue lifeguard, endurance athlete and dementia advocate, for an incredibly open conversation about lifeguarding, family, caregiving, grief, endurance sport, and his mum Trish’s journey with dementia. Reidy has spent more than 20 years as a lifeguard, becoming one of the familiar faces of Bondi Rescue. He has also completed more than 50 marathons, competed in Ironman triathlons, and even holds a Guinness World Record for running a marathon carrying a surfboard. But years before dementia became part of his own family, Reidy had already started using that endurance background to support dementia research through the 155-kilometre Bondi2Berry ride. Then his mum, Trish, was diagnosed with Alzheimer’s disease and vascular dementia. Reidy speaks candidly about watching his relationship with his mum change, stepping into a caregiving role, navigating difficult family dynamics, and eventually seeing his mum move into a nursing home. He describes the complicated grief of mourning someone who is still alive and the difficulty of leaving after a visit when his mum asks why she cannot come home with him. He also reflects on the things dementia has not taken away. Trish still remembers the words to the Elvis songs she played for her children growing up, and Reidy shares how music, old memories, family videos, puzzles and time with his children can still create moments of connection. The conversation also explores Reidy’s life beyond dementia, from growing up around Bondi and becoming a lifeguard to the beginnings of Bondi Rescue, extraordinary rescues, more than 50 marathons, Ironman racing, his 2:49 marathon, and the unlikely story behind his Guinness World Record marathon carrying a surfboard. In this episode: * Growing up around Bondi and how Reidy became a lifeguard * The real-life rescues behind Bondi Rescue * What more than 20 years of lifeguarding has taught him about patience and caregiving * Why Reidy started supporting dementia research before his mum was diagnosed * Trish’s early signs of dementia and eventual diagnosis * What it feels like to mourn someone who is still alive * The emotional difficulty of visiting a parent living in a nursing home * Navigating caregiving and complicated family relationships * Why music can still bring moments of connection with his mum * The memories of Trish that Reidy never wants to lose * Why running has become one of his most important coping mechanisms * More than 50 marathons, Ironman and breaking three hours in the marathon * The wild story behind running a 3:17 marathon carrying a surfboard * Bondi2Berry and raising money for dementia research * What Reidy wants other families navigating dementia and grief to know This is a conversation about much more than Bondi Rescue. It is about what happens when the person accustomed to being the rescuer becomes a son trying to navigate something he cannot fix. And through all of it, Reidy offers a simple message to other families living through dementia: be kind to yourself. You are navigating grief and doing the best you can. ——— 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 Andrew "Reidy" Reid 02:35 Lessons learned from lifeguarding: Patience and calmness 03:55 Reconnecting with people saved at Bondi Beach 05:33 A memorable rescue and reflection on mistakes 09:38 Bondi2Berry 17:19 Life growing up 19:12 Becoming a Bondi lifeguard 21:09 Andrew’s personal struggles and resilience 25:36 Andrew’s childhood, early life, and career path 26:37 Experiences with his mother’s dementia and caregiving challenges 35:39 Bringing children to visit the nursing home 39:43 Taking mum out for quality time 41:46 The importance of documenting family stories 50:40 First signs of dementia 01:00:56 Reflections on life, loss, and hope 01:05:32 World record race 01:12:43 IRONMAN Triathlons 01:22:47 Lightning Round 01:36:35 Bondi terrorist attack ——— 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. 1:44:06
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4xNEMzREYwQzc3REUwNDY0

The Bondi Lifeguard Taking on Dementia (with Andrew “Reidy” Reid) | EP53

What does it actually mean to build with older adults, rather than simply for them? In this special episode of The Dementia Collective, Andrew Karesa sits down with seven guests at the Silver Tech Summit 2.0 in Edmonton to explore what aging well really looks like, who gets a say in shaping that future, and why older adults need to be part of the conversation. Across seven conversations, the discussion moves from technology to care, community, entrepreneurship, research, loneliness, Indigenous perspectives, and the importance of actually listening to the people we are designing for. Featuring: * Darlene Schindel, Founder, NurseWell Collective * Dr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of Alberta * Janice Baskin, Manager, Edmonton Regional Innovation Network * Karen Murdock, Founder, Silver Longevity Business Association * Jay Pritchard, President, WE Seniors * Zoran Kovacevic, entrepreneur and founder of Pace * Chief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services Critic In this episode: * What “Build With Us, Not For Us” actually means * Why older adults need a voice in the technologies and services created for them * Why care is about more than technology * Loneliness, isolation, and rebuilding community * Turning research and innovation into real-world solutions * Entrepreneurship and designing alongside the people you serve * Indigenous entrepreneurship and culturally appropriate care for Elders * Rethinking how we define and measure successful aging This is a conversation about agency, dignity, community, independence, and who gets a seat at the table when we decide what aging well should look like. This special episode was filmed at and produced in conjunction with the Silver Tech Summit 2.0, hosted by WE Seniors in Edmonton, Alberta. Learn more at: https://www.bluebellvillage.ca ——— 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 the Silver Tech Summit 00:47 Introduction to Darlene Schindel 06:14 The Language of Caregiving 12:23 Personal Experiences in Nursing 20:30 Embracing Technology in Senior Care 28:37 Building Together: The Meaning Behind the Slogan 32:23 Introduction to Dr. Martin Ferguson-Pell 35:43 The fluid mechanics of urination 38:10 Research Impact on Aging and Disabilities 44:13 Challenges in Commercializing Innovations 47:12 Why university research is often not brought to market 54:23 Introduction to Janice Baskin 01:00:04 Edmonton Regional Innovation Network Overview 01:02:49 Entrepreneurship defined 01:05:54 Community Needs and Innovation 01:12:30 Commercialization Challenges in Innovation 01:20:51 Building with Users in Mind 01:24:38 Introduction to Karen Murdock 01:29:20 Building Community and Trust in Technology 01:37:35 Empowering Seniors: Stories of Inspiration 01:44:25 Creating Solutions for Seniors 01:51:22 Empowering Seniors to Share Their Needs 01:52:14 Introduction to Jay Pritchard 01:57:19 Humor and Connection in Senior Care 02:03:03 Strategies for Identifying Isolated Seniors 02:08:37 Building Technology with Seniors in Mind 02:12:32 Introduction to Zoran Kovacevic 02:17:27 Life on a Cruise Ship 02:23:46 Lessons from Law School and Personal Growth 02:29:02 Introducing PacePet: The AI Companion 02:34:37 Integrating Senior Feedback into Product Development 02:38:26 Introduction to Chief Billy Morin 02:41:16 Billy Morin's Background and Political Journey 02:44:16 Leadership Philosophy and Fiscal Responsibility 02:47:13 Infrastructure Development and Community Trust 02:48:37 Indigenous Knowledge and Elder Reverence 02:50:36 Cultural Values and Community Dynamics 02:51:42 Technology and Community Design 02:53:25 Entrepreneurship in Indigenous Communities 02:54:52 Balancing Community Development and Entrepreneurial Influence 02:56:07 Attracting Talent to Indigenous Communities 02:57:31 Navigating Allyship and Community Needs 02:59:21 The Importance of Ceremony and Tradition 03:00:49 Creating Urban Reserves for Indigenous Innovation 03:03:23 Building Community Spaces for Indigenous Identity 03:05:58 Indigenous Entrepreneurs in Education and Health 03:08:09 Redefining Success in Indigenous Services 03:10:01 The Role of Traditional Knowledge in Modern Solutions 03:10:56 The Haunting Absence of Indigenous Language and Culture ——— 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 3:14:05
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5CNTRCQzEzRUU4Mzc4OUIw

Build With Us Not For Us: What Aging Well Really Looks Like | LIVE from the Silver Tech Summit

What does caregiving look like when no one sees what you’re carrying? In this episode, Andrew Karesa sits down with Katie Kristofic, founder of The Carefullist, caregiver advocate, and former family caregiver, to explore the realities of supporting a loved one through Alzheimer’s disease and why she now spends her late nights helping caregivers who have nowhere else to turn. After caring for her mother through every stage of Alzheimer’s disease, Katie transformed her own experience into a mission to make caregiving less isolating. She shares the subtle signs that first made her realize something was wrong, the challenges her family faced as her mother’s condition progressed, and how her father’s quiet devotion shaped the way they navigated dementia together. Katie also reflects on balancing caregiving with a demanding corporate career, the unexpected challenges caregivers face in the workplace, and how those experiences ultimately led her to create The Carefullist. Together, Andrew and Katie discuss the hidden emotional weight of caregiving, the importance of meeting every person living with dementia where they are, the value of community, and why caregivers deserve far more support than they often receive. They also explore what happens after caregiving ends, how purpose can emerge from grief, and why helping others became part of Katie’s own healing. This is a conversation about Alzheimer’s disease, dementia, caregiving, family, grief, purpose, advocacy, and finding hope by helping others. In this episode: * How Katie first realized something was wrong with her mother * What Alzheimer’s looked like throughout her mother’s journey * How her father cared for his wife at home with creativity and compassion * The challenges of balancing a career while caring for a parent * Why so many caregivers feel isolated and unsupported * How caregiving changed Katie’s purpose after her mother’s death * Why she created The Carefullist * The importance of finding community during and after caregiving * Practical advice for families beginning a dementia journey * Why Katie spends her nights supporting caregivers online Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or someone living with dementia, this conversation is a reminder that while caregiving can often feel lonely, you do not have to carry it alone. Sometimes the greatest source of hope is knowing that someone else understands exactly what you’re going through. Learn more at: ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://www.carefullist.com ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:32 Katie Kristofic 01:00 The Carefulist: A Journey of Healing 02:45 Understanding Alzheimer's: Personal Experiences 08:42 Family Dynamics in Caregiving 11:32 Creative Caregiving Strategies 16:58 Caregiving Challenges 18:09 The Impact of Caregiving on Career 39:59 Navigating Grief and Loss 41:57 The Role of Community and Support 46:36 Navigating Caregiving Challenges 51:29 The Birth of a Podcast 53:39 Understanding The Carefulist 55:49 Lightning Round 01:00:36 Impactful Stories and Lessons 01:12:16 Finding Hope in Caregiving 01:14:28 Final Thoughts and Community Support ——— 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. 1:17:21
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wQzZFNDlFNkI3MDBBMDcx

She's Up At 2AM Because That's When Caregivers Need Her Most (with Katie Kristofic) | EP52

What if the biggest problem with dementia care is not dementia, but the way we have designed care around it? In this episode, Andrew Karesa sits down with Eloy van Hal, co-founder of the Hogeweyk and senior managing advisor with Be Advice, to explore how one of the world’s most recognized approaches to dementia care grew from a traditional institutional nursing home into a neighbourhood built around normal life, autonomy, relationships, and personhood. Often described as the world’s first “dementia village,” the Hogeweyk began transforming dementia care more than 30 years ago. Eloy explains why the goal was never simply to build a nicer nursing home, but to rethink what life could look like for people requiring complex dementia care. Together, Andrew and Eloy challenge conventional ideas about safety, locked doors, risk, independence, and what people living with dementia should be allowed to do. Eloy explains why everyday experiences like cooking with a knife, shopping for groceries, walking outside, meeting strangers, and choosing how to spend the day matter. He also shares why, if he were starting again today, he might not build a dementia village at all. Eloy also reflects on his own experience supporting his mother, who is living with dementia, and how being a family caregiver has shaped his perspective after decades of working professionally in dementia care. In this episode: * How the Hogeweyk evolved from a traditional nursing home * Why Eloy dislikes the term “dementia village” * What normal life looks like for people requiring complex dementia care * Why dementia care needs to rethink risk and safety * Whether people living with dementia should be free to leave * How small group homes and shared lifestyles create comfort * Why everyday interactions and community matter * What Eloy has learned caring for his own mother * Why leadership is essential to changing dementia care * What Eloy would do differently if building the Hogeweyk today This is a conversation about dementia care, autonomy, dignity, risk, community, leadership, and a simple idea at the heart of Eloy’s work: people living with dementia should be seen first as people, not patients. This is a conversation about dementia care, autonomy, dignity, risk, community, leadership, and a simple idea that people living with dementia should be seen people first ——— 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 Eloy van Hal, co-founder of The Hogeweyk Dementia Village 01:44 Changing the Hogeweyk 02:25 The concept of transforming a memory ward into a community neighborhood 03:22 Dream of integrating dementia support into normal neighborhoods 04:23 Moving from isolated institutions to inclusive communities 06:47 Security, autonomy, and human rights in dementia care 10:02 Current security measures and unlocking the community 11:24 Introduction to Caregiving Challenges 11:52 European approach to dementia care and autonomy 13:23 Redefining risk and safety in dementia environments 18:33 Eloy van Hal’s journey into dementia care innovation 30:21 History and evolution of the Hogevik model 34:41 Development of the neighborhood concept for dementia support 38:59 Media framing and misconceptions about dementia villages 41:35 Leadership and societal change in dementia care 43:22 Dementia villages globally 44:55 Traits of leaders driving care innovation 47:42 Community response and support for the Hogevik model 53:58 Adjustments and lessons learned at the Hogevik 01:07:57 Research, evidence, and impact stories from the Hogevik 01:13:21 Most impactful moments demonstrating the model’s success 01:14:33 How buying Fixodent denture glue showed independence and autonomy 01:17:19 Advice for creating community-centered dementia care 01:18:38 Lightning round 01:19:39 HAEVN's Biggest Groupie 01:26:21 Personal passions of Eloy van Hal 01:28:02 Disagreeing with misconceptions about dementia care 01:28:50 Thoughts on animals and their role in care environments 01:30:45 Most human thing recently experienced by Eloy van Hal 01:37:01 Sources of hope in dementia care innovation 01:38:05 Parting words: humanization and societal change ——— 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. 1:40:35
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5FMTM2MTg4QjIyQjMwODIz

The Truth About Dementia Villages (with Eloy van Hal) | EP51

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
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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
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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
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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
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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
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC44OUQ3NTI3QjhGMTRCODVD

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
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5DRDZEMDAwRUY1NTJCODA1

The Growing Pressure on Working Caregivers (with Cindy Diogo) | EP37

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