The Dementia Collective

What happens when a dementia diagnosis becomes something a family feels it needs to hide?In this episode, Andrew Karesa sits down with Dr. Cecilia Chan, a Malaysian gerontologist and dementia care specialist, to explore the stigma surrounding dementia in Malaysia and how that stigma can affect not only the person diagnosed, but their entire family. Cecilia shares stories of people avoiding diagnosis, families keeping dementia private, and the challenges of navigating a system with limited dementia-specific training and support. She also shares how her work is challenging these attitudes by creating spaces where people living with dementia can remain visible, included, and valued. In this episode:Why some families keep dementia a secretHow stigma can discourage people from seeking a diagnosisWhat happens when families receive little support after diagnosisThe consequences of limited dementia trainingWhy dementia can lead to isolation from community and faith spacesHow the Forgotten Mutiara Cafe is challenging stigmaWhy Cecilia believes belonging and personhood must remain at the centre of dementia careThis is a conversation about dementia, stigma, family, culture, faith, and what happens when fear of a diagnosis changes how people are treated.Learn more at:⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠https://ceciliacwm.wordpress.com/———Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage———This episode is brought to you by Eugeria. Check out their website for dementia products you can trust.———Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.

What if learning about dementia started before a family ever had to face it?In this episode, Andrew Karesa sits down with Maura Jahangiri, Miss Canada 2026, and dementia advocate, to explore why she believes dementia education should begin with children and how her own experience with her grandfather changed the direction of her life.Maura was around 16 when her grandfather was diagnosed with Alzheimer’s disease. Having grown up with little understanding of dementia beyond memory loss, she remembers how frightening it was to watch his behaviour change and eventually see him move into long-term care.Maura shares her goal as Miss Canada 2026: bringing dementia education into elementary schools. She explains why she believes introducing children to dementia earlier could reduce fear and stigma, help families navigate a future diagnosis, and encourage a new generation to become involved in dementia care.In this episode:How Maura’s grandfather’s Alzheimer’s diagnosis shaped her advocacyWhat it was like experiencing dementia as a teenagerThe difficult decision to move her grandfather into long-term careWhy she started working with people living with dementiaWhat “The Power of Presence” means in dementia careWhy people living with dementia should never be treated like childrenWhat she has learned working in memory care and assisted livingHow music and meaningful activities can reach people living with dementiaWhy burnout and understaffing can affect the quality of careMaura’s push to bring dementia education into elementary schoolsHow Miss Canada has given her a platform to advocate for changeWhat dignity, autonomy, and respect should look like in dementia careThis is a conversation about dementia, family, grief, education, dignity, and the power that simply showing up can have in another person’s life.Learn more at:⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠https://www.instagram.com/powerofpresence_/———Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage———This episode is brought to you by Eugeria. Check out their website for dementia products you can trust.———Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.

What happens when someone who has spent his life rescuing people faces something he cannot rescue his own mum from?In this episode, Andrew Karesa sits down with Andrew “Reidy” Reid, longtime Bondi Rescue lifeguard, endurance athlete and dementia advocate, for an incredibly open conversation about lifeguarding, family, caregiving, grief, endurance sport, and his mum Trish’s journey with dementia.Reidy has spent more than 20 years as a lifeguard, becoming one of the familiar faces of Bondi Rescue. He has also completed more than 50 marathons, competed in Ironman triathlons, and even holds a Guinness World Record for running a marathon carrying a surfboard.But years before dementia became part of his own family, Reidy had already started using that endurance background to support dementia research through the 155-kilometre Bondi2Berry ride.Then his mum, Trish, was diagnosed with Alzheimer’s disease and vascular dementia.The conversation explores Reidy’s life beyond dementia, from growing up around Bondi and becoming a lifeguard to the beginnings of Bondi Rescue, extraordinary rescues, more than 50 marathons, Ironman racing, his 2:49 marathon, and the unlikely story behind his Guinness World Record marathon carrying a surfboard.In this episode:Growing up around Bondi and how Reidy became a lifeguardThe real-life rescues behind Bondi RescueWhat more than 20 years of lifeguarding has taught him about patience and caregivingTrish’s early signs of dementia and eventual diagnosisWhat it feels like to mourn someone who is still aliveThe emotional difficulty of visiting a parent living in a nursing homeNavigating caregiving and complicated family relationshipsThe wild story behind running a 3:17 marathon carrying a surfboardBondi2Berry and raising money for dementia researchThis is a conversation about much more than Bondi Rescue. It is about what happens when the person accustomed to being the rescuer becomes a son trying to navigate something he cannot fix.Learn more at:⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠———Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage———This episode is brought to you by Eugeria. Check out their website for dementia products you can trust.———Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.

NOTE: This is Part 2 of 2 of our Silver Tech Summit 2.0 special.In this special episode of The Dementia Collective, Andrew Karesa sits down with seven guests at the Silver Tech Summit 2.0 in Edmonton to explore what aging well really looks like, who gets a say in shaping that future, and why older adults need to be part of the conversation.Featuring:Darlene Schindel, Founder, NurseWell CollectiveDr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of AlbertaJanice Baskin, Manager, Edmonton Regional Innovation NetworkKaren Murdock, Founder, Silver Longevity Business AssociationJay Pritchard, President, WE SeniorsZoran Kovacevic, entrepreneur and founder of Pace PetChief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services CriticIn this episode:What “Build With Us, Not For Us” actually meansWhy older adults need a voice in the technologies and services created for themWhy care is about more than technologyLoneliness, isolation, and rebuilding communityTurning research and innovation into real-world solutionsEntrepreneurship and designing alongside the people you serveIndigenous entrepreneurship and culturally appropriate care for EldersRethinking how we define and measure successful agingThis special episode was filmed at and produced in conjunction with the Silver Tech Summit 2.0, hosted by WE Seniors in Edmonton, Alberta.Learn more at:https://www.bluebellvillage.cahttps://silvertechsummit.ca/https://slba.ca/———Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage———Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.

NOTE: This is Part 1 of 2 of our Silver Tech Summit 2.0 special.In this special episode of The Dementia Collective, Andrew Karesa sits down with seven guests at the Silver Tech Summit 2.0 in Edmonton to explore what aging well really looks like, who gets a say in shaping that future, and why older adults need to be part of the conversation.Featuring:Darlene Schindel, Founder, NurseWell CollectiveDr. Martin Ferguson-Pell, Professor, Faculty of Rehabilitation Medicine, University of AlbertaJanice Baskin, Manager, Edmonton Regional Innovation NetworkKaren Murdock, Founder, Silver Longevity Business AssociationJay Pritchard, President, WE SeniorsZoran Kovacevic, entrepreneur and founder of Pace PetChief Billy Morin, Member of Parliament for Edmonton Northwest, former Chief of Enoch Cree Nation, and Indigenous Services CriticIn this episode:What “Build With Us, Not For Us” actually meansWhy older adults need a voice in the technologies and services created for themWhy care is about more than technologyLoneliness, isolation, and rebuilding communityTurning research and innovation into real-world solutionsEntrepreneurship and designing alongside the people you serveIndigenous entrepreneurship and culturally appropriate care for EldersRethinking how we define and measure successful agingThis special episode was filmed at and produced in conjunction with the Silver Tech Summit 2.0, hosted by WE Seniors in Edmonton, Alberta.Learn more at:https://www.bluebellvillage.cahttps://silvertechsummit.ca/https://slba.ca/———Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage———Disclaimer: This podcast is for general information only, not medical advice. Consult a qualified healthcare provider about your health. In an emergency, contact local emergency services. Guests’ views are their own and do not necessarily reflect those of Andrew Karesa or blueBell Village Ltd. Third-party references are for information only, not endorsements. You use this podcast at your own risk. Andrew Karesa, blueBell Village Ltd., and their team are not liable for any loss, injury, or damage arising from its use.