What if supporting people living with dementia was not only about care, but about activity, connection, and purpose?

In this episode, Andrew Karesa sits down with Haidong Liang, gerontologist and CEO of WE Seniors and the Westend Seniors Activity Centre, to explore why meaningful activity is critical in dementia care and healthy aging.

Haidong shares how his work bridging research, policy, and real-world community programs has reshaped how he thinks about dementia support. From the role of physical movement and social engagement to the quiet ways families can unintentionally hold seniors back in the name of love, he explains why engagement often matters more than supervision alone.

Together, Andrew and Haidong unpack what aging with dignity looks like in practice, not just in policy documents. They discuss how seniors activity centres can support people living with dementia and their caregivers long before crisis sets in, why caregivers need wraparound community support, and how local organizations can fill the gaps left by one-size-fits-all approaches to aging at home.

This episode is part of Podcasthon 2026, a global initiative highlighting nonprofits creating meaningful change in their communities. As part of Podcasthon, this conversation shines a light on WE Seniors, an Edmonton-based nonprofit doing impactful, on-the-ground work to support seniors and caregivers through inclusive programming, collaboration, and purposeful activity.

In this episode:

• Why activity and engagement are critical in dementia care

• What families notice first when participation is truly working

• How social connection supports both caregivers and people living with dementia

• Why aging is not a disease and how that belief harms care

• The role of seniors activity centres in supporting aging at home

• How community-based programs reach diverse and underserved seniors

• What aging with dignity means beyond basic care

Whether you are a caregiver, professional, policymaker, or someone thinking about aging in your own family, this conversation is a reminder that activity, connection, and purpose do not disappear with a diagnosis. They become more important than ever.

Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠⁠https://www.bluebellvillage.ca

⁠⁠https://weseniors.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 the DC universe and one of Batman’s most fascinating ideas: the Lazarus Pit.

Within the mythology of DC Comics, the Lazarus Pit offers an extraordinary promise. When the body begins to fail, the pit restores it. Age recedes. Strength returns. Life begins again.

But beneath that supernatural premise lies a deeper cultural question:

What does our fascination with reversal reveal about how society understands decline?

Often associated with Ra’s al Ghul, the Lazarus Pit represents a powerful belief embedded in both fiction and reality—the idea that decline should always be temporary, that with enough innovation or intervention the body can be returned to what it once was.

In this reflection, Andrew explores how that narrative shapes the way modern systems approach aging, illness, and vulnerability. Cultural stories tend to celebrate cure, restoration, and breakthrough. Yet far less attention is given to the structural challenge of supporting lives that change in ways that cannot simply be reversed.

By examining the Lazarus Pit through a critical lens, this episode asks whether our institutions are quietly built around the expectation of restoration—and what happens when restoration never arrives.

Batman has long explored questions of power, morality, and human limits. Here, the Lazarus Pit becomes something else: a mirror for the cultural myth that decline must always be undone.

If you care about pop culture, aging, systems design, caregiving, or the deeper stories that shape how society responds to vulnerability, this reflection pushes beyond comic lore and into the architecture of how we value people when restoration is no longer possible.

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 childhood unfolds alongside loss — not all at once, but slowly, quietly, and long before anyone knows how to name it?

In this episode, Andrew Karesa sits down with Spencer Cline — FTD advocate, former college basketball player, endurance athlete, and AFTD Ambassador — to talk about what it means to grow up while a parent is living with dementia. Spencer’s father began showing symptoms of frontotemporal dementia shortly after Spencer was born, was diagnosed when Spencer was seven, and later identified as carrying the C9orf72 genetic variant, a mutation linked to both FTD and ALS. His father passed away in 2012, but the impact of the disease shaped Spencer’s life long before that moment.

Spencer shares what it was like to grow up inside a disease few people understood — navigating embarrassment, anger, responsibility, and grief while still trying to be a kid. He reflects on the moments he didn’t yet have words for, the silence around his family’s reality, and the complicated emotions of loving a parent whose behavior no longer matched who they once were. He speaks candidly about the freedom he needed as a child, the importance of choice in caregiving relationships, and the quiet weight carried by young caregivers who are often overlooked.

The conversation also explores the role sport played in Spencer’s life — how basketball became a refuge, a place where he could escape the chaos at home and feel normal, focused, and grounded. Later, that same drive showed up in a different form: a 3,700-mile bike ride across the United States to raise awareness for FTD. Spencer recounts the physical and emotional demands of the journey, the strangers who carried him when his body couldn’t, and what endurance taught him about collective grief, community, and resilience.

Andrew and Spencer also dig into the realities of genetic dementia — the fear, uncertainty, and existential weight of knowing you may carry the same mutation that took your parent. Spencer reflects on how that knowledge shapes the way he lives, loves, and plans for the future, and why advocacy has become both an outlet for grief and a source of purpose.

Throughout the episode, Spencer challenges common assumptions about dementia — that it only affects memory, that it only happens in old age, and that children aren’t deeply impacted. He speaks openly about misdiagnosis, stigma, and why frontotemporal dementia remains widely misunderstood, even within healthcare systems.

In this episode:

• What children actually need when a parent is living with dementia

• Why choice and autonomy matter for young caregivers

• How growing up with FTD shaped Spencer’s emotional awareness and resilience

• The role of sport as refuge, identity, and survival

• What endurance challenges reveal about grief and community

• The realities of living with genetic risk

• Why FTD is often misdiagnosed — and why that matters

• How awareness work can move beyond slogans into real impact

• The unseen emotional cost of dementia on children and families

Whether you’re a caregiver raising children, an adult reflecting on your own upbringing, or someone trying to understand dementia beyond the stereotypes, this conversation offers honesty, clarity, and a rare perspective on what it means to grow up fast — and keep going anyway.

Learn more at:⁠⁠⁠⁠⁠⁠⁠

⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠

https://www.theaftd.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.

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.