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Proudly Hosting The Dementia Collective Podcast!

What happens when a system built to protect people becomes the very thing that limits their freedom — and the people inside it are left to carry the emotional weight? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Sharon Kaasalainen⁠ — nurse, ⁠researcher⁠, and co-lead of the ⁠S⁠PA-LTC palliative care initiative⁠⁠ — to explore what long-term care looks like from the inside, why caregivers often feel shut out of decisions, and how a new approach could reshape the way Canada cares for people living with dementia. Sharon has spent decades working in LTC homes, listening to care aides, supporting families, training nurses, and challenging the assumptions that have governed the sector for too long. Sharon shares the first moments that drew her into this work as a young bed-maker in long-term care, the early conversations that showed her how invisible caregiver expertise often is, and the painful reality of watching families arrive in crisis because no one prepared them for what was coming. She opens up about the unspoken tensions between nurses and care aides, the discomfort many providers feel around palliative conversations, and the fear that regulations and punitive oversight are pushing good people out of the profession. Together, Andrew and Sharon dive into why caregivers are still viewed as “difficult,” how early palliative conversations can calm crisis before it begins, and why the most meaningful innovations in LTC aren’t high-tech — they’re human. They examine models from the Netherlands, the need for smaller household-style living, the power of relationships in shaping resident well-being, and what it will take to trust LTC teams enough to let them innovate again. They also tackle the darker side of regulation: Bill 14, the rise of investigators, and what happens when a sector meant to care becomes a sector afraid to move. Sharon offers a candid perspective on the burnout of nurses, the undervaluing of care aides, and the emotional cost of a system where everyone feels watched but no one feels supported. In this episode: • Why caregivers should be involved from the very beginning — not only when signatures are needed • How early palliative conversations help families avoid crisis • The role of care aides, and why their expertise must be recognized and regulated fairly • Why LTC feels more like an institution than a home — and how to change that • How the Netherlands is reshaping global expectations for dementia care • The emotional reality of nurses navigating impossible workloads • The danger of punitive regulation and how it undermines innovation • How SPA-LTC is reducing hospital transfers and improving quality of dying • Why listening is still the most underrated skill in dementia care • What Sharon hopes the next generation of LTC will finally get right Whether you’re a caregiver advocating for a loved one, a healthcare provider navigating the pressures of LTC, or someone trying to understand how we rebuild a system from the inside out, Sharon’s insights offer clarity, compassion, and a vision for long-term care where people — not policies — come first. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ ⁠https://spaltc.ca⁠ 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. 54:33
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What’s Really Wrong With Long-Term Care (And How We Fix It) (with Dr. Sharon Kaasalainen)

What happens when dementia enters a home where achievement is expected, aging is denied, and illness isn’t talked about until it can’t be ignored? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Anoushka Fernandes⁠ — caregiver, consultant, and founder of ⁠The Soggy Sandwich⁠ — to explore how dementia shows up inside South Asian families and why silence still surrounds it. After leaving a senior government role to support her parents, Anoushka found herself navigating a disease few in her community were willing to name, let alone prepare for. Anoushka shares the early signs her family noticed, the denial that followed, and the emotional hit of realizing that even a highly educated, active, and disciplined person like her mother could be affected. She opens up about the guilt, anger, and grief that shape caregiving, the isolation that comes from being “the one who steps in,” and the cultural expectations placed on daughters in first-generation households. Together, Andrew and Anoushka unpack why dementia remains stigmatized in South Asian homes, how cultural values both help and hinder caregiving, and what Canadian caregivers need to understand when supporting someone who grew up in a completely different world. They also talk about the power of early diagnosis, the gaps in Alberta’s healthcare navigation, the importance of community support, and why she became an early adopter of ⁠blueBell Connect⁠ during her mother’s care. In this episode: • Early signs families often miss — and why denial is common • How South Asian cultural expectations shape caregiving roles • The emotional paradoxes caregivers face: anger, guilt, grief, and acceptance • Why isolation grows in a hyperconnected world • How to find reliable information without getting lost in online noise • What Canadian caregivers need to know when supporting South Asian parents • The role of the ⁠Alzheimer Society⁠ and system navigators • Why she created ⁠The Soggy Sandwich⁠ after her mother’s sudden passing • How ⁠blueBell Connect⁠ helped her keep dispersed family members aligned Whether you are a caregiver searching for better communication strategies, a professional working in memory care, or someone looking for clarity on what truly helps, Rachael’s insights are a reminder that connection is still possible — especially when we meet people where they are. Learn more at:⁠⁠ ⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠ ⁠https://thesoggysandwich.ca/blog/⁠ ⁠https://www.marcelinomarisesolutions.com⁠ 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. 1:11:15
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Dementia, Stigma, and Care in South Asian Families (with Anoushka Fernandes)

What if better dementia communication didn’t start with correcting someone — but by stepping into their world? In this episode, Andrew Karesa sits down with ⁠Rachael Wonderlin⁠, internationally recognized dementia care expert and founder of ⁠Dementia By Day⁠, to explore a transformative idea reshaping how caregivers connect with loved ones: their reality comes first. Rachael shares how her early experiences as a dementia care director pushed her beyond traditional guidance like “redirect and distract” and toward a more compassionate approach built on understanding a person’s lived reality. From her concepts of embracing their reality and timeline confusion to her improv-based communication workshop, she offers caregivers practical tools that actually work in everyday moments. Together, Andrew and Rachael unpack why care inconsistency happens in communities, how families can advocate respectfully, and what meaningful engagement really looks like. They also explore the cultural differences she’s observed across care environments, the importance of proper staff training, and why storytelling remains one of the most powerful teaching tools in dementia care. In this episode: • Why embracing a person’s reality leads to calmer, more meaningful interactions • How timeline confusion explains “recognition” challenges • Common blind spots in care communities — and how families can navigate them • The role of improv in dementia communication • Why proper caregiver training changes everything • Practical signs of a strong dementia care community • What motivated Rachael to build ⁠Dementia By Day School⁠ Whether you are a caregiver searching for better communication strategies, a professional working in memory care, or someone looking for clarity on what truly helps, Rachael’s insights are a reminder that connection is still possible — especially when we meet people where they are. Learn more at:⁠⁠ ⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠ ⁠https://rachaelwonderlin.com⁠ ⁠https://dementiabyday.com⁠ ⁠https://dementiabydayschool.com⁠ 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. 52:16
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4xN0EwMDIyNjM0N0FGMkUw

Their Reality Comes First (with Rachael Wonderlin)

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