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Proudly Hosting The Dementia Collective Podcast!

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
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5CNEM0MzBCNDY3RkU1NUMw

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
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
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5CNTk5RDhGNzdCMkRBRDUz

When Caregiving Becomes Stewardship (with Lizette Cloete) | EP41

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Want more informative and impactful demetia content? Check out The Dementia Collective for more information.