What a Year of Dementia Advocacy Taught Me (with Anoushka Fernandes)

What a Year of Dementia Advocacy Taught Me (with Anoushka Fernandes)

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 [https://www.linkedin.com/in/andykaresa/] steps out of the interviewer’s chair and becomes the guest. Joined by guest host Anoushka Fernandes [https://www.linkedin.com/in/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 [https://thedementiacollective.ca], 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 [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 [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.

Who Tells the Story? Dementia, Hollywood, and Caregiving (with Alfredo Botello)

What if dementia is not only a medical condition, but a story shaped by who gets to tell it? In this episode, Andrew Karesa [https://www.linkedin.com/in/andykaresa/] sits down with novelist and screenwriter [https://alfredobotello.com/] Alfredo Botello [https://www.linkedin.com/in/alfredo-botello-aa16aaa0/] 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://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠] ⁠https://alfredobotello.com [https://alfredobotello.com] ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage [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.

Why 30 Years of Dementia Caregiving Broke Every Assumption She Had (with Lori La Bey)

What happens when a family is left to navigate dementia without clear guidance or support? In this episode, Andrew Karesa [https://www.linkedin.com/in/andykaresa/] sits down with Lori La Bey [https://www.linkedin.com/in/lorilabeyalzheimersspeaks/], founder of Alzheimer’s Speaks [https://alzheimersspeaks.com/], 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://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠] ⁠https://alzheimersspeaks.com [https://alzheimersspeaks.com] https://dementiamap.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 [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.

Anosognosia: Why They Don't Believe Anything's Wrong (with Karen Tyrell)

What happens when correcting someone you love no longer brings clarity, and may actually increase distress? In this episode, ⁠Andrew Karesa⁠ [https://www.linkedin.com/in/andykaresa/] sits down with ⁠Karen Tyrell⁠ [https://www.linkedin.com/in/karen-tyrell/], founder and CEO of ⁠Personalized Dementia Solutions [https://dementiasolutions.ca/]⁠, to explore one of the most common and misunderstood challenges in dementia care: the instinct to correct. With more than 30 years of experience supporting families and frontline care teams, Karen explains why arguing often backfires, what anosognosia really means, and why some individuals genuinely do not believe anything is wrong. She unpacks how dementia changes insight, reasoning, and perception, and why logic alone is rarely enough. Karen introduces the concept of therapeutic reasoning and walks through practical steps caregivers can use to reduce escalation while preserving dignity. She shares how small shifts in language can prevent repeated emotional harm, how to navigate difficult moments like repeated questions about a deceased spouse, and why medications should not be the first response to agitation. The conversation moves beyond tactics. Karen reflects on stigma over the decades, how dementia care has evolved, and why families should build support early rather than waiting for crisis. She also speaks about her work developing dementia designation programs and creating accessible education that empowers both professionals and unpaid caregivers. In this episode: • Why correcting someone living with dementia often increases distress • What anosognosia is and how it changes conversations • The difference between honesty and therapeutic reasoning • How to respond when someone repeatedly asks about a deceased loved one • Why agitation is communication, not defiance • When medications should and should not be considered • How to build support before burnout sets in • What preserving dignity looks like in real 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://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠] ⁠https://dementiasolutions.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 [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.

What Happens When Dementia Takes You Back in Time (with Glenna Hecht)

How do you stay connected to someone when dementia seems to be pulling them further away? In this episode of The Dementia Collective, Andrew Kares [https://www.linkedin.com/in/andykaresa/]a sits down with Glenna Hecht [https://www.linkedin.com/in/glennahecht/], 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. 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. 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.bluebellvillage.ca] https://www.howoldareyoutoday.com [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 [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.