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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 UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5DREQyNTBBODE4MzEyMjg4 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.
Why Dignity in Care Looks Nothing Like You Think (with Varsha Bhat) | EP42
August 5, 2026 9:30 pm
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
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5DREQyNTBBODE4MzEyMjg4

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

How do you stay connected to someone when dementia seems to be pulling them further away? In this episode of The Dementia Collective, Andrew Karesa sits down with Glenna Hecht, author, speaker, and former HR executive, to explore the unexpected game that transformed her nine year journey caring for her mother living with dementia. Glenna shares the moment everything shifted. After watching her mother move in and out of different ages and memories, she stopped trying to correct the confusion and started asking a different question: “How old are you today?” What began as instinct became a framework. A way to travel with her mother instead of fighting against where she was. Throughout the conversation, Glenna describes what it meant to “be quiet, watch, listen, travel.” By observing her mother’s eyes, body language, and stories, she learned how to enter the world her mother was experiencing in that moment. If her mother was 54, they were 54. If she was in her 20s, they stayed there. The goal was not orientation. It was connection. Glenna also reflects on the hardest moments of caregiving, including walking away from her mother behind a locked metal door in a psychiatric ward while scrambling to secure power of attorney and legal authority. She speaks candidly about guilt, distance, and the realization that she had not fully understood what was happening sooner. As a longtime HR leader and consultant, Glenna brings a second lens to the discussion. She explains why most workplaces are not prepared for the growing number of employees who are quietly caregiving. Managers often see performance changes without recognizing the hidden burden at home. Dementia caregiving is not just a family issue. It is a workforce issue. The episode also challenges one of the most common myths about dementia: the belief that “there is nobody in there.” Glenna argues the opposite. People living with dementia are not lost. They are often time traveling. The responsibility falls on us to meet them where they are. This conversation moves between vulnerability and practicality, from lemon rinds that “smell like sunshine” to daily gratitude rituals built on her mother’s five life rules. At its core, this is a story about choosing curiosity over correction and presence over control. In this episode: • The origin of the “How Old Are You Today?” game • Why observing and listening matters more than fixing • What the psych ward experience taught Glenna about preparation and advocacy • The workplace blind spot around caregiving employees • Why the myth that “there is nobody in there” is harmful • How time travel can become a pathway to connection • What dementia taught Glenna that decades in business never could Whether you are caring for a parent with dementia, supporting a partner living with Alzheimer’s disease, or trying to understand how to stay connected as memory shifts, this episode offers a grounded and deeply human perspective on what is possible when we stop arguing with reality and start entering it. Learn more at: https://www.bluebellvillage.ca https://www.howoldareyoutoday.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 Stories and Vulnerability 07:35 The Game: A Unique Approach to Dementia 13:39 Five Life Lessons from a Mother 19:23 The Journey of Caregiving 25:04 Finding Joy in the Caregiving Experience 31:06 The Transformative Power of Memory and Connection 42:14 Understanding Caregiver Challenges 45:39 The Impact of Writing on Grief 48:53 Lessons from Caregiving and HR Experience 52:22 Workplace Preparedness for Caregivers 56:32 Reader Responses and Book Impact 58:28 Key Takeaways from the Book 59:16 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. 1:11:24
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What Happens When Dementia Takes You Back in Time (with Glenna Hecht) | EP32

Why do so many men struggle to ask for help when caring for someone living with dementia? In this episode of The Dementia Collective, Andrew Karesa sits down with Ron Beleno, caregiver advocate and leader in the aging and dementia space, to explore the role men play in dementia caregiving and why many feel pressure to handle the responsibility alone. Ron begins by sharing his own caregiving journey after his father was diagnosed with dementia in 2007. Over more than a decade of supporting his father, Ron experienced firsthand the emotional and practical realities of caring for a parent with dementia, and how that experience shaped the work he does today supporting caregivers across Canada. Much of the conversation centers on the expectations many men carry when they step into caregiving roles. Ron reflects on the pressure to remain strong for the family, to manage dementia care independently, and how those expectations can make it difficult for male caregivers to ask for help or build support networks early in the journey. Andrew and Ron also explore the idea of the care team and why dementia caregiving becomes far more sustainable when responsibility is shared. Rather than trying to manage everything alone, Ron speaks about the importance of inviting others into the journey, whether family members, friends, community supports, or what he describes as “caring community members.” The conversation also touches on caregiver mindset and the internal conversations many caregivers have with themselves. Ron discusses how stress, responsibility, and cultural expectations can shape the way caregivers think about their role, and how reframing those expectations can help families navigate dementia with greater confidence and connection. Throughout the episode, Ron returns to a consistent theme: that caregiving does not need to be carried alone. Building a care team early can transform the experience not only for the caregiver, but for the person living with dementia as well. In this episode: • Why men are often underrepresented in dementia caregiving conversations • The pressure many male caregivers feel to manage dementia care alone • Why asking for help can feel difficult for men caring for a parent with dementia • The importance of building a care team early in the caregiving journey • How caregiver mindset shapes the dementia caregiving experience • The role of caring community members in dementia support networks • Why sharing responsibility can make caregiving more sustainable Whether you are caring for a parent with dementia, supporting a loved one living with Alzheimer’s disease, or trying to better understand the caregiving experience, this conversation offers thoughtful insight into the challenges many families quietly navigate and the importance of building support along the way. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠https://www.bluebellvillage.ca⁠ https://www.ronbeleno.com https://wecanbe.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 Ron Beleno and His Journey 01:58 Innovations in Caregiving and Community Engagement 02:29 Introduction to Caregiving Perspectives 02:30 Introduction to the Conversation 02:30 Navigating Male Caregiving Dynamics 13:54 Ron Beleno's Caregiving Journey 19:38 The Importance of a Care Team 29:24 Innovative Solutions in Caregiving 37:40 Breaking Down Barriers to Care Team Support 48:06 Understanding the Game of Dementia 55:06 The Role of Caregivers and Support Systems 01:01:32 Embracing Technology in Dementia Care 01:06:49 Introducing WeCanBe.ca: A New Innovation 01:17:19 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. 1:26:30
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Why Men Struggle to Ask for Help in Dementia Care (with Ron Beleno) | EP31

What does it mean to love someone whose personality is changing and to slowly realize it is not them? In this episode, Andrew Karesa sits down with Erin Chalmers, co-anchor of Global Edmonton Morning News, daughter, caregiver, and Board Member of the Alzheimer Society of Alberta and Northwest Territories, to talk about her mother’s Alzheimer’s diagnosis and the quiet shift from confusion to clarity that many families experience. Erin shares what the first signs looked like in 2022, the moment her family realized something deeper was happening, and the decision to be proactive instead of reactive. She opens up about sitting down with her mom early to talk through care preferences, navigating a system that can feel fragmented, and learning to separate the disease from the person she loves. The conversation moves beyond logistics. Erin reflects on how caregiving reshaped her identity, how she learned not to take certain behaviours personally, and why the phrase “that’s the disease” became a turning point in her understanding. She speaks candidly about advocating during a hospital stay, the emotional weight of watching cognition fluctuate, and the importance of day programs and structured support for caregivers. Together, Andrew and Erin explore what meaningful caregiver support actually looks like in Alberta, why the system often relies heavily on families to coordinate care, and what she hopes changes for the next generation. They also discuss what initially drew her to blueBell Connect, the importance of centralized communication within family care teams, and the kind of families who would benefit most from a personalized coordination tool. In this episode: • The early signs families often question or dismiss • Why being proactive after diagnosis matters • How to separate the disease from the person • What hospital experiences reveal about gaps in dementia care • The emotional cost of caregiving and how to avoid losing yourself • Why day programs can be a lifeline for families • What meaningful caregiver support in Alberta should look like • How centralized communication tools can reduce stress and confusion Whether you are walking through a new diagnosis, supporting a parent from a distance, or working within the healthcare system, Erin’s story is a reminder that even as memory changes, identity and dignity remain. Connection is still possible. She is still there. 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 Navigating Caregiving and Public Life 03:36 The Journey to Diagnosis 06:42 The Role of Caregivers 09:30 Understanding Dementia 12:25 Social Interaction and Support 15:04 The Impact on Family Dynamics 18:14 Shifting Roles and Responsibilities 21:16 Preparing for the Future 24:10 The Need for Support Systems 27:21 Advocating for Care 30:06 The Stigma of Dementia 32:55 Finding Resources and Support 35:38 The Importance of Community 38:48 Challenges in the Healthcare System 41:45 The Caregiver's Journey 44:58 Advocacy in Action 49:52 The Struggles of Hospital Care for Dementia Patients 57:18 The Emotional Toll of Caregiving 01:02:38 Advocacy and Involvement with the Alzheimer's Society 01:07:12 Navigating Resources and Support for Caregivers 01:10:00 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. 1:18:42
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She’s Still There: Separating Alzheimer’s from the Person You Love (with Erin Chalmers) | EP30

What if the problem isn’t whether Canada has a dementia strategy, but whether families can actually feel it? In this episode, Andrew Karesa sits down with Dr. Saskia Sivananthan to examine the gap between Canada’s National Dementia Strategy and the lived reality of families, clinicians, and communities trying to navigate brain change. Drawing on her experience working at the intersection of research, policy, and national coordination, Dr. Sivananthan unpacks what strategy is supposed to do, where implementation breaks down, and how funding decisions shape what support is actually available on the ground. Together, Andrew and Saskia discuss federal leadership, provincial variation, accountability, and why a plan on paper does not automatically translate into coordinated care. The conversation moves beyond individual caregiving stories to ask a broader systems question: if we say we have a national plan, what would it look like for families to experience it as one? In this episode: • What Canada’s National Dementia Strategy was designed to accomplish • How funding shifts affect coordination and long-term impact • The difference between announcing a strategy and implementing one • Why fragmentation across provinces continues to shape care experiences • The role of accountability in national health initiatives • Where Canada lags and where it shows leadership globally • What meaningful national alignment in dementia care could actually look like Whether you are a caregiver, policymaker, clinician, researcher, or someone trying to understand how dementia care is structured in Canada, this conversation offers a grounded look at the systems behind the support families depend on. Learn more at:⁠⁠ ⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ https://brainwellinstitute.org 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. ——— 00:00 Introduction to the National Dementia Strategy 05:36 The Role of Federal and Provincial Governments 11:38 The Need for Integrated Care 17:28 System Fragmentation and Patient Experience 23:45 The Future of Dementia Care in Canada 29:30 Conclusion and Call to Action 39:23 Understanding Dementia Care Coordination 48:37 The Urgency of Action in Dementia Care 54:21 Economic Models for Dementia Care 59:34 Planning for Dementia: Early Conversations 01:01:10 Lightning Round ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 1:11:54
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Where’s the Plan for Dementia Care in Canada? (with Dr. Saskia Sivananthan) | EP29

What happens to joy when dementia enters the picture? When routines change, roles shift, and caregiving becomes heavier than anyone expected, is joy still possible, or does it quietly disappear? In this episode of The Dementia Collective, Andrew Karesa sits down with Carrie Aalberts, gerontologist, dementia educator, and founder of Dementia Darling, to explore why joy still matters in dementia care and how it can exist alongside grief, exhaustion, and uncertainty. Carrie shares her personal journey into dementia care, shaped by her grandmother’s diagnosis and years working inside senior living, adult day programs, and community-based care. She reflects on what surprised her early on, including how often families were left without guidance, and how those experiences reshaped her understanding of dignity, empathy, and what meaningful care actually looks like. Much of the conversation centers on joy, not as positivity or denial, but as an intentional and evolving practice. Carrie explains how joy changes throughout the dementia journey, why it looks different than it once did, and how caregivers can find moments of connection even in the most difficult seasons. She emphasizes presence, slowing down, and letting go of unrealistic expectations placed on both caregivers and people living with dementia. Andrew and Carrie also explore the role of children in dementia care, sharing why intergenerational spaces can foster empathy, normalize aging, and create powerful moments of connection. They discuss how community-based models challenge the isolation many families experience, and why caregiving should never be a solitary endeavor. The conversation turns to systemic barriers in dementia care, including cost, staffing shortages, and the emotional toll placed on family caregivers who are often forced to navigate complex systems with little support. Carrie speaks candidly about burnout, grief, and the need for better structures that honor both caregivers and care workers. Throughout the episode, they examine how technology can enhance care when used thoughtfully, from virtual reality and remote support tools to digital education platforms that meet caregivers where they are. Rather than presenting technology as a replacement for human connection, Carrie frames it as a way to reduce burden, expand access, and preserve dignity. In this episode: • Why joy still matters in dementia care • How joy changes throughout the caregiving journey • The emotional reality caregivers rarely talk about • Why intergenerational care benefits both children and elders • Systemic barriers families face when seeking support • How technology can enhance connection and quality of life • What dignity-centered dementia care really looks like Whether you are a caregiver, a professional, or someone walking alongside a loved one with dementia, this conversation offers reassurance, honesty, and a grounded reminder that joy does not disappear with diagnosis. It changes, it deepens, and it still belongs. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠https://www.bluebellvillage.ca⁠⁠ ⁠https://www.dementiadarling.com⁠ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Finding Joy in Caregiving 08:55 The Role of Children in Dementia Care 17:06 Navigating Family Caregiving 22:40 Utilizing Technology in Caregiving 28:37 Building a Community of Care 36:37 Quality vs. Quantity in Care 50:47 The Impact of Caregiver Support 57:31 The Emotional Journey of Caregiving 01:08:00 The Role of Technology in Enhancing Care 01:13:43 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. 1:21:35
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The Practice of Joy in Dementia Care (with Carrie Aalberts) | EP28

What does it mean when a former governor says caregiving was harder than public office? In this episode, Andrew Karesa sits down with former Wisconsin Governor Martin J. Schreiber, author of My Two Elaines, for a deeply personal conversation about loving, caring for, and slowly losing his wife Elaine after her Alzheimer’s diagnosis. Marty brings a perspective few people can offer. He has lived in the world of leadership, policy, and public responsibility, yet says the hardest role he ever held was caregiver. What unfolds in this conversation is not a political discussion, but a human one. It is about what dementia asks of a family, how caregiving changes your identity, and why so many people are unprepared for what the journey really becomes. Together, Andrew and Marty explore the emotional reality of caring for someone whose mind is changing over time. Marty reflects on the idea behind My Two Elaines: that the woman he loved was still there, but Alzheimer’s required him to relate to her differently. In turn, he had to become a different version of himself too. The conversation also explores the hidden toll caregiving takes on families, why caregivers must protect their own health, and what governments still fail to understand about supporting families living with dementia. In this episode: • Why caregiving was harder than being governor • The meaning behind My Two Elaines • How dementia changes both the person diagnosed and the caregiver • Why arguing with dementia often makes things worse • The emotional toll caregiving takes on spouses and families • Why caregivers must protect their own health • What policymakers still misunderstand about dementia care Whether you are caring for a spouse, supporting a parent, or trying to understand how dementia reshapes a family, this conversation offers honesty, perspective, and a reminder that even when memory changes, connection still matters. ——— 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 Caregiving and Dementia Advocacy 06:12 Marty's Journey into Caregiving 11:49 Social Stigma and Public Perception of Dementia 17:49 The Importance of Self-Care for Caregivers 24:01 Connecting with Loved Ones Through Dementia 29:11 Navigating Caregiving with a Large Family 36:23 Navigating Caregiver Challenges in Canada 42:16 The Role of Government in Caregiver Support 47:17 The Political Landscape of Dementia Care 50.18 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. 1:2:51
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Harder Than Being Governor: Caring for My Wife with Alzheimer’s (with Gov. Martin Schreiber) | EP27

What happens to faith when memory fades, words disappear, and the person we knew begins to change in ways that feel unfamiliar, or even unsettling? In this episode of The Dementia Collective, Andrew Karesa sits down with Elisa Bosley, chaplain and founder of SpiritualElderCare.com, to explore how faith, music, and presence continue to matter in dementia care, especially near the end of life. Elisa begins by sharing her own origin story and how she was drawn into chaplaincy work with older adults. She reflects on what first surprised her when accompanying people living with dementia, and how those early experiences reshaped her understanding of faith, identity, and what it truly means to offer spiritual care. Much of the conversation centers on music, particularly hymns, and why they so often reach people long after other forms of communication have fallen away. Elisa explains how familiar songs can act as a bridge to comfort, connection, and peace, even when cognitive decline is advanced, and why music frequently carries spiritual meaning when spoken theology no longer does. Andrew and Elisa also explore the tension many families feel when a loved one’s beliefs or behaviours near the end of life seem incongruent with who they were earlier. They discuss common fears about faith, salvation, and whether dementia can somehow sever a person’s relationship with God. Rather than offering simplistic answers, Elisa speaks from her experience walking alongside individuals and families in long term care, emphasizing presence, reassurance, and trust over correction or fear. The conversation addresses chaplaincy in diverse care settings, including how Elisa approaches interfaith spaces with sensitivity and respect. She reflects on the difference between supporting someone spiritually and evangelizing them, and why honoring a person’s history, values, and sense of safety matters far more than imposing belief. Throughout the episode, Elisa returns to a consistent theme: that dignity, comfort, and connection are not lost simply because cognition changes. She shares what she has witnessed again and again in long term care, moments where peace, familiarity, and faith surface quietly through song, touch, or presence. In this episode: • Why hymns often reach people late in dementia • How music can act as a bridge to comfort and faith • What families fear when beliefs seem to change near the end of life • Whether dementia can affect a person’s relationship with God • The difference between spiritual support and evangelization • How chaplains navigate interfaith spaces in long term care • What brings peace and dignity near the end of life Whether you are a caregiver, a family member, or someone wrestling with questions about faith, memory, and meaning in dementia, this conversation offers reassurance, reflection, and a grounded reminder that presence often speaks louder than certainty. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠https://www.bluebellvillage.ca⁠ https://spiritualeldercare.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 Power of Worship Music in Dementia Care 04:21 Elisa's Journey into Chaplaincy 08:51 Becoming a Non-Denominational Chaplain 10:56 Impact of Online Worship Services 14:04 Recognizing a Calling in Chaplaincy 15:40 Navigating Denominational Differences 18:38 Understanding Spiritual Connection in Dementia 21:24 A Day in the Life of a Chaplain 26:50 Adapting Worship Music for Different Generations 28:28 Meaningful Spiritual Care in Dementia 30:20 Lessons Learned from Dementia Care 33:04 Faith Manifesting at the End of Life 37:12 Navigating Secular and Diverse Spiritual Spaces 37:47 Navigating Faith in Care Facilities 41:03 Understanding Changes in Faith and Behavior 46:26 Pastoring Families Through Guilt and Fear 48:53 Filling the Gaps in Spiritual Elder Care 51:54 Finding Hope in Dementia Care 53:30 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. 56:55
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Can Dementia Separate Us From God? (with Elisa Bosley) | EP26

What if good dementia care was not about getting everything right, but about understanding the person in front of you? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Natali Edmonds⁠, board certified geropsychologist and founder of ⁠Dementia Careblazers⁠, to explore what caregivers are rarely told about dementia care, and why striving for perfection often makes the journey harder, not better. Natali shares her path into geropsychology, from a formative moment during her clinical training that exposed how poorly systems serve older adults, to her work inside hospital and home based care settings. She reflects on why short appointments and blanket rules fail families, and how individualized, compassionate care makes a meaningful difference. Together, Andrew and Natali unpack the emotional weight caregivers carry, why self blame is so common, and how well intentioned strategies can sometimes increase stress for both caregivers and their loved ones. They also discuss early onset dementia, gaps in existing supports, the role of multidisciplinary care, and why listening to a person’s response matters more than following rigid guidance. In this episode: • Why good dementia care is not about perfection • What caregivers often overthink, and what they miss instead • How to evaluate advice and credentials in a crowded online space • Why explaining “you have dementia” can backfire • When safety strategies help, and when they hide unmet needs • The unique challenges of early onset dementia and younger caregivers • How self compassion changes the caregiving experience • What caregivers are doing better than they realize Whether you are caring for a loved one with dementia, navigating burnout and self doubt, or working professionally in aging and memory care, this conversation is a grounded reminder that doing your best does not mean doing everything right. Good dementia care is personal, human, and shaped by the person you are caring for. Learn more at:⁠⁠ ⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠ ⁠⁠⁠https://careblazers.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 Information Overload 02:36 Understanding Credentials in Dementia Care 05:29 The Journey to Geriatric Specialization 08:41 The Impact of Dementia on Families 11:40 Early Onset Dementia and Unique Challenges 14:35 The Need for Systemic Change in Support 17:29 The Role of Caregivers in Dementia Care 20:29 Shifting from Clinical Practice to Online Support 23:16 Common Misconceptions in Dementia Care 26:15 Finding Balance as a Caregiver 38:54 Understanding Dementia: Communication Challenges 44:32 Safety Measures: Balancing Care and Freedom 47:57 Navigating Appointments: When to Question Necessity 51:15 Understanding Stages of Dementia: The Bigger Picture 55:36 The Impact of Caregiving: Personal Growth and Change 59:12 Planning for the Future: Creating a Dementia Care Plan 01:01:28 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. 1:8:50
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Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds) | EP25

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