The Dementia Collective

What if the biggest problem with dementia care is not dementia, but the way we have designed care around it? In this episode, Andrew Karesa sits down with Eloy van Hal , co-founder of the Hogeweyk and senior managing advisor with Be Advice, to explore how one of the world’s most recognized approaches to dementia care grew from a traditional institutional nursing home into a neighbourhood built aro...

What if your two-year-old was happy, healthy, and meeting her milestones, but you were told she would eventually begin to lose everything she had learned? In this episode, Andrew Karesa sits down with Emily Forrester , mum to Leni and childhood dementia advocate, to share her family’s journey after Leni was diagnosed with Sanfilippo syndrome Type B, a rare and progressive form of childhood dementi...

What would it look like if our public spaces were designed to include people living with dementia? In this special episode of The Dementia Collective, Andrew Karesa sits down with Junette Huynh , Director of Projects, and Lindsay Paul , Director of Philanthropy and Partnerships at Parks Foundation Calgary , to explore the story behind the Martin Family Legacy Garden , Canada’s first dementia-inclu...

What if we could build a world that works better for people living with dementia? In this episode, Andrew Karesa sits down with Valerie Larochelle , CEO and co-founder of Eugeria , to explore how better products, technology, environments, and communities can help people living with dementia maintain independence, autonomy, and quality of life. Valerie’s work is deeply personal. Three of her four g...

What happens when we stop avoiding conversations about death and start talking about what matters most? In this episode, Andrew Karesa sits down with Lisa Pahl , licensed clinical social worker, end-of-life educator, healthcare and death doula, and CEO of The Death Deck , to explore why some of life’s most difficult conversations may also be the most important. Drawing on nearly two decades of hos...

What happens when the caregiver becomes the person living with dementia? In this episode, Andrew Karesa sits down with Michael Booth , dementia advisor, educator, advocate, and author, to explore what it means to navigate life after a young onset Alzheimer’s disease diagnosis while continuing to create, teach, and challenge the stigma surrounding dementia. Michael shares the deeply personal journe...

What does it take to turn one father’s final request into a movement that is changing how the world thinks about dementia? In this episode, Andrew Karesa sits down with Hassan Fadli , engineer, endurance athlete, filmmaker, and founder of the nonprofit initiative Five Ironmans Beat Alzheimer’s . After his father’s Alzheimer’s diagnosis, Hassan was asked to do something not just for his family, but...

What happens when someone whose life has been built around words is forced to watch the person they love slowly lose the ability to find them? In this episode, Andrew Karesa sits down with Dr. Cindy Weinstein , the Eli and Edythe Broad Professor of English at Caltech , Atlantic Fellow for Equity in Brain Health, and co-author of Finding the Right Words . Together, they explore her father’s journey...

What does it mean to keep living fully after an Alzheimer’s diagnosis, especially when the world so often treats dementia as the end of a person’s life? In this episode, Andrew Karesa sits down with Samuel Simon , playwright, former consumer advocate, and the creator of Dementia Man . After a lifelong career fighting for the public interest, Sam is now using theatre to challenge one of the most da...

What does it mean to care for someone with dignity when culture, language, family, and personal identity are often overlooked? In this episode, Andrew Karesa sits down with Varsha Bhat , business and innovation leader, caregiver advocate , Vice-Chair of the Alzheimer Society of Montreal , and host of the Aging With Dignity podcast. Varsha shares how her mother’s dementia diagnosis and her father’s...

What happens when dementia challenges not only how we care, but what we believe about a person’s value? In this episode, Andrew Karesa sits down with Lizette Cloete , founder of Think Different Dementia , occupational therapist, dementia advisor, family caregiver, and host of the Dementia Caregiver Support for Christians podcast . Drawing on more than 30 years of experience and her own caregiving...

People sometimes describe receiving a dementia diagnosis as something that feels like it will shatter their life. In this Ask the Experts conversation, Andrew Karesa asks Michael Booth , Samuel Simon , Phyllis Fehr and Jim Mann : “As someone who has been through this journey, what is the first step that you would have to support someone in moving past the initial fear and reclaiming control over t...

What happens when the people holding the care system together start to break? In this episode, Andrew Karesa sits down with Stephanie Muskat , an award-winning registered clinical social worker, psychotherapist, caregiver advocate, and founder of Compassion in Caregiving , to explore the emotional, practical, and systemic realities of caregiving. Stephanie shares her story of becoming a caregiver...

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, a...

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 start...

What if Hollywood’s dementia problem is not just what it shows, but what it leaves out? In this episode, Andrew Karesa sits down with filmmaker, writer, director, producer, and caregiver advocate Susie Singer Carter to explore dementia, storytelling, long-term care, and the responsibility that comes with representing people who are too often misunderstood. Susie shares the story of caring for her...

In this episode, ⁠ Andrew Karesa ⁠ sits down with ⁠Cindy Diogo⁠ , CEO and Co-Founder of ConSoul , to explore what it means to support employees who are caring for a loved one living with dementia. Drawing on her background in HR and People & Culture, as well as her own family caregiving journey, Cindy reflects on the growing reality that more families are trying to navigate dementia care while...

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 conversati...

What if dementia is not only a medical condition, but a story shaped by who gets to tell it? In this episode, Andrew Karesa sits down with novelist and screenwriter Alfredo Botello to explore caregiving, storytelling, and the power of representation. Alfredo shares his experience caring for his mother and how that journey influenced his writing. From the private realities of family caregiving to t...

What happens when a family is left to navigate dementia without clear guidance or support? In this episode, Andrew Karesa sits down with Lori La Bey , founder of Alzheimer’s Speaks , to explore what a decades-long caregiving journey reveals about the realities of dementia care. Lori supported her mother through a 30-year experience with dementia. What began as confusion and uncertainty became a li...

What happens when correcting someone you love no longer brings clarity, and may actually increase distress? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠ Karen Tyrell⁠ , founder and CEO of ⁠ Personalized Dementia Solutions ⁠, to explore one of the most common and misunderstood challenges in dementia care: the instinct to correct. With more than 30 years of experience supporting families and fr...

How do you stay connected to someone when dementia seems to be pulling them further away? In this episode of The Dementia Collective, Andrew Kares a sits down with Glenna Hecht , author, speaker, and former HR executive, to explore the unexpected game that transformed her nine year journey caring for her mother living with dementia. Glenna shares the moment everything shifted. After watching her m...

Why do so many men struggle to ask for help when caring for someone living with dementia? In this episode of The Dementia Collective, Andrew Karesa sits down with Ron Beleno , caregiver advocate and leader in the aging and dementia space, to explore the role men play in dementia caregiving and why many feel pressure to handle the responsibility alone. Ron begins by sharing his own caregiving journ...

What does it mean to love someone whose personality is changing and to slowly realize it is not them? In this episode, Andrew Karesa sits down with Erin Chalmers , co-anchor of Global Edmonton Morning News , daughter, caregiver, and Board Member of the Alzheimer Society of Alberta and Northwest Territories , to talk about her mother’s Alzheimer’s diagnosis and the quiet shift from confusion to cla...

What if the problem isn’t whether Canada has a dementia strategy, but whether families can actually feel it? In this episode, Andrew Karesa sits down with Dr. Saskia Sivananthan to examine the gap between Canada’s National Dementia Strategy and the lived reality of families, clinicians, and communities trying to navigate brain change. Drawing on her experience working at the intersection of resear...