In this bonus episode of The Dementia Collective, Andrew Karesa takes a close look at what a dementia village actually is — and why, despite decades of evidence that they work, Canada has yet to build one at scale.

The video begins with a simple number: more than 400 Canadians are diagnosed with dementia every day. By 2050, that number is projected to reach 1.7 million. Andrew uses that as a starting point to ask a harder question — not just how we will care for people, but whether the systems we are building are actually designed for living.

Drawing on the story of the Hogeweyk in Weesp, Netherlands — a secure neighbourhood for 188 residents with advanced dementia, operating since 2008 — Andrew walks through what person-centred design actually looks like in practice. He examines the research outcomes, the global spread of the model, and the alternative approach taken by the Restaurant of Mistaken Orders in Japan.

He also doesn't sidestep the critiques. The constructed reality argument, the cost and equity problem, and the question of whether a better institution is still just an institution — all of it gets examined.

The episode closes with a look at what is keeping this model from scaling in Canada: funding structures built around clinical interventions, building codes designed for acute care, and a workforce crisis that is already here. Drawing on data from the Alzheimer Society of Canada's Landmark Study, Andrew makes the case that the blueprint exists — and that what is missing is not knowledge. It is the belief that the final years of life deserve the same investment as any other.

This episode is part of the ongoing blueBell Village conversation about person-centred care, caregiver support, and what it means to actually live well with dementia.

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0:00 Understanding Dementia: A Growing Concern in Canada
3:43 Design Principles of a Dementia Village
7:14 The Dementia Village Model: A New Approach
8:18 Ethical Considerations and Critiques
12:28 The Future of Dementia Care: A Call to Action
13:59 Implementation Challenges

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Consider becoming a member of the village on Patreon — it will go a long way in helping break dementia stigma. For only the price of a Starbucks coffee per month: https://www.patreon.com/cw/blueBellVillage

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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 can one year of dementia conversations teach us about care, stigma, grief, advocacy, and hope?

In this special one-year anniversary episode of The Dementia Collective, Andrew Karesa steps out of the interviewer’s chair and becomes the guest. Joined by guest host Anoushka Fernandes, Andrew reflects on how the show began almost by accident, what it has grown into, and what a year of conversations with caregivers, people living with dementia, researchers, advocates, clinicians, authors, and public voices has taught him.

Together, Andrew and Anoushka look back on the moments that shaped the show, from the first caregiver support webinar to the powerful stories that changed how Andrew thinks about dementia, personhood, stigma, family, grief, regret, and hope.

They also go behind the scenes of The Dementia Collective, including the emotional weight of listening to deeply personal caregiving stories, the work that goes into producing the show, and where Andrew hopes to take it in year two.

In this episode:
• How The Dementia Collective began by accident
• What Andrew has learned from caregivers, experts, and people living with dementia
• The stories and guests that stayed with him most
• Why dementia stigma remains so harmful
• The emotional weight of hearing caregiving stories
• What goes into producing the show behind the scenes
• Where Andrew hopes to take The Dementia Collective in year two
• A special lightning round with Anoushka
• Details on the one-year birthday giveaway

Whether you have followed from the beginning or this is your first episode, this conversation is a reflection on why these stories matter and why no caregiver, family, or person living with dementia should feel alone.

Birthday Giveaway:

To celebrate one year of The Dementia Collective, we’re giving away a special prize to one member of our community.

To enter:
• Subscribe to The Dementia Collective wherever you watch or listen to the show
• Like this episode
• Comment with the phrase “Remember the Person”
• Share one episode, moment, guest, or topic from TDC that stayed with you

Contest closes July 8, 2026 at 11:59 PM MST. The winner will be contacted by the official blueBell Village account.

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

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

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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 your family before you even know how to name it?

In this episode, Andrew Karesa sits down with Katie Brandt, global advocate, national dementia care expert, and Director of Caregiver Support Services at the Massachusetts General Hospital Frontotemporal Disorders Unit, to talk about young caregiving, frontotemporal dementia, Alzheimer’s disease, grief, advocacy, and what it means to keep showing up when life changes all at once.

Katie shares the story of her husband, Mike, who was diagnosed with behavioral variant frontotemporal dementia at only 29 years old. At the time, their son Noah was not yet one. Just weeks later, Katie’s father was diagnosed with young-onset Alzheimer’s disease. Suddenly, Katie found herself caring for two adult men living with progressive neurodegenerative diseases while also raising her young child.

Together, Andrew and Katie discuss the early signs of FTD, why the symptoms are so often misunderstood, and how families can mistake changes in behaviour, personality, judgment, and impulse control for something other than dementia.

This is a conversation about FTD, young-onset dementia, caregiving, grief, love, advocacy, and the systems that too often leave families to figure everything out on their own.

In this episode:
• Katie’s journey as a young caregiver, wife, mother, and daughter
• How Mike was diagnosed with behavioral variant FTD at 29
• Why FTD is often mistaken for depression, a midlife crisis, or relationship problems
• How Katie’s father’s young-onset Alzheimer’s diagnosis changed her caregiving role
• The guilt and grief of moving a loved one into care
• How diagnosis gave Katie back her love story with Mike
• How young caregivers are often misunderstood
• The role of advocacy, policy, research, and community in changing dementia care
• Why support should not disappear after the person living with dementia dies

Whether you are caring for someone with FTD, Alzheimer’s disease, young-onset dementia, or another diagnosis, this conversation is a reminder that dementia does not only affect the person living with it. It changes families, relationships, futures, and identities. But it also shows why community, support, and honest conversations matter so deeply.

Learn more at:
https://www.bluebellvillage.ca
https://www.katiebrandt.org
https://www.ftdboston.org

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

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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.