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The Dementia Collective Podcast

The Dementia Collective is a place for caregivers, families, and anyone impacted by dementia to find clarity, support, and hope. Each episode features real conversations with people who are shaping the world of dementia care: caregivers, clinicians, researchers, and community leaders who bring practical insight and lived experience.

The show also highlights those working alongside the dementia community through advocacy, awareness, endurance challenges, and innovative projects. From marathoners raising research funding to founders building new care models, these voices expand the conversation and show what meaningful impact can look like from many directions.

Whether you’re navigating daily care, searching for trustworthy guidance, or looking for inspiration from people making a difference, The Dementia Collective gives you grounded advice and stories that help you feel less alone

We say it often, but it’s true. It takes a village!

We are truly grateful for our supporters who have put their faith in us, and want to help us grow. You can those member of The Village here on our Wall of Appreciation.

If you would like to join them in The Village, and help us reach more families, you can support the podcast here

Find The Dementia Collective anywhere you get your podcasts!

Podchaser - The Dementia Collective

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4yNjFFMzVEMkVDRTRDOEMz

What if good dementia care was not about getting everything right, but about understanding the person in front of you?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Natali Edmonds⁠, board certified geropsychologist and founder of ⁠Dementia Careblazers⁠, to explore what caregivers are rarely told about dementia care, and why striving for perfection often makes the journey harder, not better.

Natali shares her path into geropsychology, from a formative moment during her clinical training that exposed how poorly systems serve older adults, to her work inside hospital and home based care settings. She reflects on why short appointments and blanket rules fail families, and how individualized, compassionate care makes a meaningful difference.

Together, Andrew and Natali unpack the emotional weight caregivers carry, why self blame is so common, and how well intentioned strategies can sometimes increase stress for both caregivers and their loved ones. They also discuss early onset dementia, gaps in existing supports, the role of multidisciplinary care, and why listening to a person’s response matters more than following rigid guidance.

In this episode:
• Why good dementia care is not about perfection
• What caregivers often overthink, and what they miss instead
• How to evaluate advice and credentials in a crowded online space
• Why explaining “you have dementia” can backfire
• When safety strategies help, and when they hide unmet needs
• The unique challenges of early onset dementia and younger caregivers
• How self compassion changes the caregiving experience
• What caregivers are doing better than they realize

Whether you are caring for a loved one with dementia, navigating burnout and self doubt, or working professionally in aging and memory care, this conversation is a grounded reminder that doing your best does not mean doing everything right. Good dementia care is personal, human, and shaped by the person you are caring for.

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

———

Join The Village and help shape conversations like this by submitting questions to our guests: 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.

Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds)

April 8, 2026 9:30 pm

What if good dementia care was not about getting everything right, but about understanding the person in front of you?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Natali Edmonds⁠, board certified geropsychologist and founder of ⁠Dementia Careblazers⁠, to explore what caregivers are rarely told about dementia care, and why striving for perfection often makes the journey harder, not better.

Natali shares her path into geropsychology, from a formative moment during her clinical training that exposed how poorly systems serve older adults, to her work inside hospital and home based care settings. She reflects on why short appointments and blanket rules fail families, and how individualized, compassionate care makes a meaningful difference.

Together, Andrew and Natali unpack the emotional weight caregivers carry, why self blame is so common, and how well intentioned strategies can sometimes increase stress for both caregivers and their loved ones. They also discuss early onset dementia, gaps in existing supports, the role of multidisciplinary care, and why listening to a person’s response matters more than following rigid guidance.

In this episode:
• Why good dementia care is not about perfection
• What caregivers often overthink, and what they miss instead
• How to evaluate advice and credentials in a crowded online space
• Why explaining “you have dementia” can backfire
• When safety strategies help, and when they hide unmet needs
• The unique challenges of early onset dementia and younger caregivers
• How self compassion changes the caregiving experience
• What caregivers are doing better than they realize

Whether you are caring for a loved one with dementia, navigating burnout and self doubt, or working professionally in aging and memory care, this conversation is a grounded reminder that doing your best does not mean doing everything right. Good dementia care is personal, human, and shaped by the person you are caring for.

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

———

Join The Village and help shape conversations like this by submitting questions to our guests: 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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4yNjFFMzVEMkVDRTRDOEMz

Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds)

What happens when families sense cognitive change years before dementia is ever named, and are left living in uncertainty while waiting for clarity that arrives too late?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Greg McGillis⁠, engineer, entrepreneur, and founder of ⁠Brain Care Technologies⁠, to explore why dementia is so often detected only after lives have already been disrupted, and what might change if cognitive decline were noticed earlier.

Greg shares the long arc of his career, beginning in the early 1990s working in assistive technology with people whose physical disabilities limited their independence. That early work shaped his understanding of dignity and agency, lessons that stayed with him through decades in engineering leadership before he made a deliberate return to biomedical engineering later in life.

The conversation becomes deeply personal as Greg reflects on supporting his father in law, who is now living with Lewy body dementia in long term care. He speaks candidly about watching subtle changes accumulate, the years of uncertainty before answers arrived, and how families are often left wishing they had known sooner, not for a cure, but for time, planning, and fewer surprises.

Andrew and Greg explore why the gap between early brain changes and clinical diagnosis remains so wide, and what families lose during that waiting period. They discuss how current systems often rely on crisis rather than curiosity, and why caregivers are frequently the first to notice cognitive change long before healthcare systems are prepared to respond.

The episode also examines Greg’s work at Brain Care Technologies and his belief that understanding brain function earlier, through non invasive approaches, can support better conversations and planning. Rather than positioning technology as a solution on its own, Greg emphasizes its role in helping families move from confusion to clarity, while respecting uncertainty and avoiding false promises.

Throughout the conversation, Greg challenges the idea that early awareness should be feared. He speaks to the importance of hope grounded in realism, and why earlier understanding, even without definitive answers, can empower families rather than overwhelm them.

In this episode:
• Why dementia is often detected years after cognitive changes begin
• What families lose during the long wait for answers
• Why caregivers are usually the first to notice change
• The emotional toll of uncertainty before diagnosis
• What early awareness can and cannot change today
• How earlier understanding can support planning and dignity
• Why proactive dementia care must be handled with honesty and care

Whether you are a caregiver, a family member, or someone trying to understand dementia beyond clinical timelines and stereotypes, this conversation offers clarity, perspective, and a grounded look at why knowing sooner can change how dementia care is experienced.

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

———

Join The Village and help shape conversations like this by submitting questions to our guests: 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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wOEE0NEE4QTk1RTc0MUJB

Knowing Sooner Changes Everything in Dementia Care (with Greg McGillis)

Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage

———

What happens when a diagnosis doesn’t just change a life, but quietly changes the way a room responds to you?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Phyllis Fehr⁠, an international dementia advocate, registered nurse, author, and ⁠human rights leader⁠ who has been living with a diagnosis of early-onset Alzheimer’s since the age of 53. Phyllis’s relationship with dementia began long before her own diagnosis, shaped by early caregiving experiences in her family and later by a career in critical care nursing. Those layers of lived experience inform everything she shares in this conversation.

Phyllis reflects on what it was like to notice changes in herself, to seek answers as a healthcare professional, and to eventually receive a diagnosis that altered not only how systems saw her, but how people spoke to her, looked at her, and included her. She describes moments where conversations shifted mid-sentence, where attention moved away from her, and where assumptions about capacity replaced curiosity about who she still was.

Throughout the conversation, Phyllis speaks candidly about living with dementia day to day. She challenges the idea that diagnosis equals disappearance, and explains how capacity, autonomy, and consent can fluctuate without vanishing. She shares how she continues to assess her own abilities, adapt when needed, and assert her right to be involved in decisions about her life.

Andrew and Phyllis also explore how dementia becomes a human rights issue, not only in policy rooms, but in ordinary interactions. Phyllis draws from her work with provincial, national, and international bodies, including advisory roles and advocacy at the ⁠United Nations⁠, to explain how people living with dementia are often invited into conversations symbolically but excluded in practice. She speaks openly about tokenism, stigma, and the emotional cost of constantly having to prove you are still capable.

The episode also touches on the importance of creativity, intergenerational relationships, and purpose. Phyllis shares how staying engaged, writing, speaking, and connecting with children and grandchildren has helped her maintain identity and meaning, even as she navigates change. Rather than framing dementia as a story of loss alone, she offers a more complex and honest account of what remains.

Throughout the episode, Phyllis challenges common assumptions about dementia, including who it affects, how capacity is understood, and why silence and exclusion often cause more harm than the disease itself.

In this episode:
• What changes socially after a dementia diagnosis, even when the person is still present
• How being treated differently can erode dignity long before abilities are lost
• What capacity and consent look like when cognition fluctuates
• Why living with dementia is also a human rights issue
• How advocacy rooted in lived experience differs from policy on paper
• The role of creativity, purpose, and connection in living well with dementia
• Why claiming your voice matters, even when systems are uncomfortable listening

Whether you are living with dementia, supporting someone who is, or trying to understand dementia beyond stereotypes and clinical language, this conversation offers clarity, honesty, and a powerful reminder that diagnosis does not erase personhood.

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

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wRjA0RDE2QTUwMTk2MkY2

Claiming Your Voice When Systems Try to Silence You (with Phyllis Fehr)

Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage

———

What if dementia isn’t just something that happens to us, but something shaped over time by how we live?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Tommy Wood⁠, neuroscientist, physician, and author of The Stimulated Mind, to explore one of the most challenging ideas in brain health: that a significant portion of dementia may be preventable, and that everyday choices play a meaningful role across the lifespan.

Dr. Wood’s work spans newborn brain injury, long-term cognitive health, and elite performance with Formula 1 drivers. At the center of it is a simple question: what helps the brain stay resilient, adaptable, and capable over time?

Together, Andrew and Tommy explore the concept of “headroom,” the brain’s ability to build capacity so that decline has less impact when it comes. They revisit the common belief that dementia is simply part of aging and look at why focusing on a single cause, like amyloid, has limited our understanding of cognitive decline.

The conversation moves into what actually matters in daily life. From physical activity and social connection to cognitive challenge and recovery, Tommy explains which behaviors are most influential and where people often focus on the wrong things.

They also consider what this means for families already living with dementia. What still makes a difference after a diagnosis? What is worth prioritizing when time and energy are limited? And how can we talk about prevention in a way that supports, rather than burdens, caregivers?

The episode also explores populations with very low rates of dementia and what their lifestyles reveal about the gap between what we know and how we live. Along the way, Tommy offers perspective on brain training, optimization, and the tendency to overcomplicate what is often more straightforward.

In this episode:
• What “45% of dementia may be preventable” actually means
• The idea of “headroom” and how the brain builds resilience
• Why focusing only on amyloid falls short
• Which behaviors have the greatest impact on brain health
• The role of social connection in protecting the brain
• What people misunderstand about brain training and stimulation
• The gap between knowledge and action
• What still matters after a dementia diagnosis
• What caregivers can let go of
• How to prioritize when you cannot do everything

Whether you are thinking about your own future, supporting someone you love, or trying to make sense of conflicting advice around brain health, this conversation offers a clearer understanding of what matters and where to focus your energy.

Learn more at:⁠⁠
⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠
⁠https://www.drtommywood.com⁠
⁠⁠https://www.drtommywood.com/stimulated-mind⁠
⁠https://www.amazon.com/Stimulated-Mind-Future-Proof-Brain-Dementia/dp/0593797817⁠

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5CMTk0M0ExREZBODAzNDUw

Nearly Half of Dementia Could Be Prevented. Why Isn’t It Happening? (with Dr. Tommy Wood)

In this Ask the Experts conversation, Governor Martin Schreiber, Ron Beleno, Alfredo Botello, and Spencer Cline explore why so many male caregivers struggle to ask for help. The discussion examines the pressure men often feel to stay strong, handle everything alone, and suppress their own needs, while also unpacking the guilt, silence, and isolation that can come with caregiving.

———

Join The Village and help shape conversations like this by submitting questions to our guests: 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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4yMDAwMzEwNzAzNENFRTUw

Ask the Experts: Male Caregivers Speak Out on Their Biggest Challenge

Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage

———

What if dementia care isn’t about having the right answers, but about responding to the moment you’re in?

In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Teepa Snow⁠, one of the most respected voices in dementia care, to explore what it really means to support someone living with brain change when memory, language, and recognition come and go.

Drawing on more than four decades of experience as an occupational therapist, educator, and caregiver, Teepa shares how dementia care shifts when we stop correcting, stop forcing outcomes, and start meeting people where they are right now. Together, Andrew and Teepa talk about presence, improvisation, caregiver grief, and why connection often matters more than getting things “right.”

The conversation also touches on dementia in the public eye, young onset and childhood dementias, brain injury and risk, and the ways communities can better support people living with dementia without stripping away agency or dignity.

In this episode:
• Why dementia care happens in the moment, not in the past or future
• How letting go of correction can reduce distress and build connection
• What people with dementia still understand long after memory fades
• The emotional cost of caregiving and the importance of debriefing and support
• Dementia under public scrutiny and the added pressure families face
• Young onset and childhood dementias that are rarely discussed
• Why communities, not just clinicians, play a critical role in care

Whether you’re a caregiver, family member, professional, or someone trying to understand dementia more deeply, this conversation offers practical insight and reassurance for navigating care one moment at a time.

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

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5BNDc1MTI1RDk0OTgwQjFC

Presence Over Perfection in Dementia Care (with Teepa Snow)

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5BN0Q0NTk3QTY3NEFDOTE1

The Dementia Care Mistake Families Make Out of Love (with Dr. Haidong Liang)

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5GQjMwOTIyMjFDNDRBODY5

I Carried a Weight I Couldn't Name (with Spencer Cline)

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5FRDBBQjE3MzdGNDBGMEJE

Dementia Care in Canada Is Broken — Here's Why (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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC42RjkxMEE5MTI1MzBCOEIw

Dementia, Shame, and What Daughters Carry Alone (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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4xN0EwMDIyNjM0N0FGMkUw

Their Reality Comes First (with Rachael Wonderlin)

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC41MTA4RkYwMjM4QzhBNTE3

Ask the Experts: Can You Ethically Disguise Exits in Dementia Facilities?

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5BOUNEMEI0OUY1OEEwQzdC

The Farm That’s Changing Dementia Care in Canada (with Rebekah Churchyard)

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.ca⁠⁠⁠
https://run4papa.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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5EMjg2Q0U4RjAyNjZDOTI2

The Race Against Dementia Starts With a Single Step (with Jason Boschan)

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.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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC42QzUzNDk3NEJCNjU2ODcx

What If Dementia Care Was About Connection Instead of Decline? (with James Lee)

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wRUM0NDVEMzZDODkxRUQ3

The Voice Caregivers Trust: Lessons from 20 Years in Home Care (with Lance A. Slatton)

What if your family forgot who you were? What if you had just minutes to prepare to be remembered?

In this episode, ⁠Andrew⁠ talks with ⁠Aaron Tong⁠, caregiver, father, and founder of ⁠Aeternum⁠ — a private, inheritable digital platform designed to preserve memory, legacy, and identity across generations.

Aaron shares the deeply personal story behind Aeternum: a terrifying flight, a conversation with his young daughter, and the realization that even love isn’t always enough to be remembered. What started as a father’s promise became a mission to help other families — especially those affected by dementia — capture the stories, voices, and values that make us who we are.

Together, they explore how preserving memory can reduce caregiver stress, rebuild empathy, and offer families a new way to stay connected — even after memory fades.

In this episode:

• The moment Aaron thought he wouldn’t make it home — and what he did next
• Why his daughter’s question changed everything: “What if I don’t remember you?”
• How Aeternum helps caregivers preserve stories before they’re lost
• Why traditional platforms like Facebook fall short for legacy and dementia support
• How memory-sharing can reduce friction and rehumanize caregiving
• What engineering taught Aaron about building simple, meaningful technology
• Why legacy matters more than ever for caregivers and the next generation

Whether you’re just starting the dementia journey or reflecting on what remains after someone is gone, this episode is a powerful reminder: we all deserve to be remembered — and there are ways to make that easier.

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

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC44NEE4MTNBOUY2MDRFRUU4

I Thought I Was Going to Die — So I Built This to Help My Kids Remember Me (with Aaron Tong)

In this powerful episode of The Dementia Collective, host ⁠Andrew Karesa⁠ sits down with ⁠Stephanie Fauquier⁠ — strategic leader, endurance athlete, and founder of Race with Steph — to explore how love, movement, and purpose can transform the way we talk about dementia.

When Stephanie’s mother, ⁠Dr. Robin McLeod⁠, an Order of Canada recipient and trailblazing surgeon, was diagnosed with Alzheimer’s, she chose to act. What began as one triathlon became ten races across Canada, raising nearly $1 million for Alzheimer’s research and sparking a national conversation about compassion, resilience, and legacy.

Together, Andrew and Stephanie talk about caregiving through travel, finding structure amid chaos, and how kindness and curiosity can help families face dementia with strength and grace.

In this episode:
• How Race with Steph united communities across Canada
• Lessons from Dr. Robin McLeod’s life and legacy
• The reality of traveling with a loved one living with Alzheimer’s
• Why resilience and community matter in caregiving
• How small steps can lead to lasting change

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

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5BODVEMjUxQTc4NkJFMEY3

10 Races, 1 Million Dollars, and a Mother's Legacy (with Stephanie Fauquier)

What does it really mean to care for someone with dementia — not just keep them safe, but keep them seen?

In this episode, Andrew talks with Katie Fyfe, caregiver, storyteller, and founder of Eldering.co.uk, who moved her father next door and gave him a dog — not because it was easy, but because it was right. That decision sparked a journey that led to the creation of @dadanddolly, a growing community centered on joy, memory, and connection in the face of Alzheimer’s.

Katie shares how her lived experience caring for both her mother and father has shaped a life and business rooted in empathy. Through creative projects like the Dad and Dolly Project, she’s showing that later life — and caregiving — can be full of meaning, if we choose to slow down, pay attention, and care with intention.

In this episode:
• Katie’s journey from medicine to caregiving
• Why she moved her dad next door — and eventually in together
• The role Dolly (the dog) plays in companionship and cognitive strength
• Daily strategies to help her father live well with dementia
• The surprising power of clothing, memory, and routine
• How society undervalues care work — and why that needs to change
• Why creativity is essential to both care and identity

Whether you’re walking the dementia journey now or preparing for it in the future, this conversation is a moving reminder that care isn’t just what we do — it’s who we become.

Learn more at:
https://www.bluebellvillage.ca
https://www.eldering.co.uk
https://www.dadanddolly.com
https://www.instagram.com/dadanddolly

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5CNzc5NTU4RTg3Q0EyRUZE

The Unexpected Power Of A Dog Named Dolly (with Katie Fyfe)

In this episode of The Dementia Collective, Andrew Karesa discusses the profound impact of language in dementia care. He emphasizes the importance of using respectful and person-centered language, which acknowledges the individuality of those living with dementia. By reframing terms and focusing on the person rather than the diagnosis, caregivers can foster better relationships and improve the quality of care. The conversation also highlights how language influences behavior and communication, urging listeners to consider the implications of their words in the context of dementia care.

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.

YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4zOTExNTAwOERBMTNFRUM4

Language in Dementia Care: What Nobody's Talking About

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