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.

In this short bonus episode of The Dementia Collective, Andrew Karesa turns to Star Trek: The Next Generation and the episode “Sarek” to examine a deeper cultural question:

What happens when a society built on logic confronts cognitive decline?

Through the allegory of Bendii Syndrome, this five minute reflection moves beyond disease comparison and into structural critique. Vulcan culture equates control with honour, rationality with legitimacy, and composure with dignity. When that control falters, the response is not only medical. It is political.

By contrasting Bendii Syndrome with dementia, Andrew explores how modern systems respond to cognitive vulnerability. When autonomy shifts, who decides? When capacity changes, what happens to dignity? And how often does “protection” become quiet control?

This episode challenges the assumption that dementia erodes human worth. Instead, it asks whether our institutions are designed in ways that make stigma inevitable.

Star Trek has long been a vehicle for social critique. Here, it becomes a mirror for how we structure autonomy, caregiving, and legitimacy in the face of aging.

If you care about dementia, systems design, ethics, or the future of dignity in aging, this reflection pushes beyond description and into the architecture of how we value people when logic fails.

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 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.

In this short bonus episode of The Dementia Collective, Andrew Karesa challenges one of the most common assumptions in dementia care: that a person living with dementia is simply “confused.”

What if that word is masking something more specific?

Through an unexpected comparison using characters from Pokémon, this five minute reflection explores the difference between slowed cognitive processing and neurological overload. These two patterns can look similar on the surface, but they require very different responses from caregivers.

By examining how Alzheimer’s disease and other forms of dementia affect processing speed, attention, and sensory filtering, Andrew invites listeners to reconsider how they interpret pauses, agitation, and behavioural changes.

When we shift from labeling behaviour to understanding what may be happening in the brain, dementia care becomes more patient, more precise, and more effective.

If you care for a person living with dementia or want a clearer understanding of cognitive decline and memory changes, this short episode offers a practical and thought provoking perspective.

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 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.comDisclaimer: 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.

In this Ask the Experts conversation, Teepa Snow (Positive Approach to Care), Carrie Aalberts (Dementia Darling), Dr. Natali Edmonds (Dementia Careblazers), and Rachael Wonderlin (Dementia by Day) explore the ethics of disguising exits in dementia care. The discussion includes real-world examples such as bookshelf-painted doors, waterfall murals, and other environmental design strategies used to reduce exit-seeking, while weighing safety, dignity, and autonomy.

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 if the future of dementia care wasn’t in a hospital, but on a farm?

In this episode, Andrew Karesa sits down with Rebekah Churchyard, Founder and CEO of Green Care Farms, to explore how one granddaughter’s love for her grandparents sparked a new model of dementia care rooted in nature, purpose, and community.

After witnessing the gaps her grandparents faced in rural dementia care, Rebekah set out to reimagine what support could look like. Today, her award-winning organization operates Canada’s first nature-based day program for people living with dementia on an operational farm, where participants harvest vegetables, feed animals, and rediscover the joy of meaningful work.

Together, Andrew and Rebekah unpack the deeper connection between land and care, the socioeconomic opportunity within Canada’s agri-food sector, and why she envisions a care farm in every community across Canada. They also discuss how caregivers can find renewal in the simplicity of open skies, green fields, and shared purpose.

In this episode:

• How Rebekah’s grandparents inspired the creation of Green Care Farms

• What a typical day on a care farm looks like for someone living with dementia

• The global roots of care farming and why Canada is ready for it

• Challenges and opportunities for rural dementia care

• How care farms support food security and community resilience

• The growing movement to make care farming part of Canada’s care system

• Rebekah’s vision for a care farm in every community

Whether you are a caregiver, policymaker, or someone dreaming of a better way to age, Rebekah’s story is a reminder that healing can happen anywhere, especially when care meets the land.

Learn more at:⁠⁠

https://www.bluebellvillage.ca⁠⁠⁠

https://www.carefarmscanada.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.

What if one man’s run could change the course of dementia research?

In this episode, Andrew Karesa sits down with Jason Boschan, founder of Run4Papa, to explore how one grandson’s promise to his “Papa” became a global movement for hope, awareness, and change.

Inspired by his grandfather, Dr. Louis “Papa” Heyman — a lifelong pediatrician who dedicated his life to caring for others — Jason has run marathons on all seven continents, raising nearly $400,000 in pilot funding that has generated over $20 million in research grants.

Together, Andrew and Jason reflect on what it means to turn loss into legacy, why transparency builds trust in philanthropy, and how running can become a powerful form of advocacy. From the Great Wall of China to Mount Everest, Jason shares the lessons learned through every mile — and the families that keep him moving forward.

In this episode:

• The story behind Run4Papa and its mission to fund dementia research

• How one race on the Great Wall of China changed everything

• The power of storytelling and connection in global fundraising

• Turning $350K into $10M+ in research impact

• Why “everyone impacted by dementia is — or was — someone’s #1”

• Lessons on resilience from marathons in Antarctica, Africa, and Everest

• The vision for 50 half marathons in 50 states — and what drives him next

Whether you’re a caregiver, a runner, or someone searching for purpose through loss, Jason’s story is a reminder that hope can travel any distance — and that sometimes, the race for a cure begins with a single step.

Learn more at:⁠https://www.bluebellvillage.ca⁠https://run4papa.comDisclaimer: 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 if dementia care wasn’t about managing decline — but about nurturing connection, learning, and joy?

In this episode, Andrew Karesa sits down with James Lee, co-founder and CEO of Bella Groves, a dementia care community in Bulverde, Texas, that’s redefining what person-centered care can look like.

For nearly 20 years, James has been reshaping senior living from the inside out — from his early days as a caregiver to his work as an industry leader, TEDx speaker, and founder of the Senior Living Think Tank. His journey reveals why the heart of dementia care isn’t efficiency or systems — it’s people.

Together, Andrew and James explore what it means to lead with head and heart, the trade-offs of private versus public funding models, and how small communities can spark big change through empathy, education, and design. James also shares how Bella Groves is building a “learning community” that empowers families and professionals alike — and why joy should be measured as carefully as outcomes.

In this episode:

• The “accident” that led James from finance to dementia care

• How Bella Groves redefines success through Unconditional Joy™

• Why time is the caregiver’s most precious resource

• The myth of operational efficiency in care settings

• How the Senior Living Think Tank is creating global collaboration

• Lessons from dementia communities in Amsterdam and Okinawa

• Why joy doesn’t need to be remembered to be meaningful

Whether you’re a caregiver, a leader, or simply curious about what’s next for dementia care, this conversation will challenge how you see the future — and remind you that good care begins and ends with connection.

Learn more at:https://www.bluebellvillage.ca

https://www.bellagroves.com

https://www.thinktankleadership.comDisclaimer: 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 does trust look like when you’re caring for someone with dementia — and how do families rebuild it when systems, stress, and exhaustion get in the way?

In this episode, Andrew sits down with Lance A. Slatton — known to millions as The Senior Care Influencer and host of the award-winning podcast All Home Care Matters.

For more than 20 years, Lance has walked alongside families through the hardest parts of dementia care. From caring for his own grandmother and father, to leading one of Michigan’s most respected home care organizations, he’s seen how honesty, compassion, and community can turn fear into hope.

Together, they explore what caregivers often get wrong, what professionals sometimes forget, and the simple truths that make care work — trust, dignity, and connection.

In this episode:

• The early lessons that shaped Lance’s life in care• What honesty really means in dementia support

• How to recognize and recover from caregiver burnout• The hidden cost of revolving-door care

• Why faith and purpose sustain caregivers when nothing else can

• The story behind All Home Care Matters — and what nearly 400 conversations have taught him about resilience

Whether you’re a new caregiver or deep in the thick of it, this episode is a grounding reminder that good care isn’t just about doing more — it’s about being there, with trust at the center.

Learn more at:

https://www.bluebellvillage.ca

https://www.elhcs.com

https://lanceaslatton.com

https://allhomecarematters.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.