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Proudly Hosting The Dementia Collective Podcast!

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, and Phyllis Fehr: “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 their future?” Speaking from lived experience, they discuss what helped them move forward after diagnosis, including accepting support, talking openly with others, seeking professional and peer support, allowing space for grief without remaining trapped in it, and learning to live more fully in the present. They also reflect on making practical changes, planning for the future, protecting personhood, challenging stigma, finding purpose, and adapting to life in ways that still allow for choice, connection, and meaning. This is not a conversation about giving up on the future. It is about recognizing that a diagnosis does not erase the person, and that reclaiming control can begin with one honest conversation, one decision to accept support, and one step toward living in the present. If this conversation resonates with you, please like, comment, and subscribe. On podcast platforms, follow the show so you do not miss future conversations. 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, you can help support conversations like this and submit questions for future guests: https://www.patreon.com/cw/blueBellVillage ——— 00:00 Diagnosed with Dementia. Now What? 00:17 Michael Booth | Author of 'Forget Me Not: The Letter in the Headboard' 05:43 Samuel Simon | Dementia Man 07:38 Phyllis Fehr | Co-Author of 'How to Live Well with Dementia' 14:43 Jim Mann | Canada's Leading Voice on Dementia Stigma ——— 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. 19:23
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Ask the Experts: What Comes After a Dementia Diagnosis?

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 at 19, when her mother began showing signs of what was later diagnosed as frontotemporal dementia. As an only child, she was suddenly navigating doctors, specialists, hospitals, discharge planning, and family dynamics while trying to build her own life. Together, Andrew and Stephanie discuss what caregivers carry that often goes unseen: guilt, anger, burnout, resentment, grief, and the pain of family members who do not show up. They also explore why caregivers are often treated as a “given” in the healthcare system, despite holding so much of it together. Stephanie challenges the label of the “difficult caregiver” and explains why advocacy is often misunderstood when families are trying to protect someone they know best. She also reflects on young caregiving, children and dementia, cultural expectations, caregiver mental health, and why dementia should not be hidden from family life. This is a conversation about caregiving, family, burnout, advocacy, guilt, grief, and the urgent need to stop treating caregivers as invisible background support. In this episode: • Becoming a caregiver at 19 • Why frontotemporal dementia can be hard to recognize • When family members do not show up • The harm of calling someone a “difficult caregiver” • How unpaid caregivers hold the system together • Why anger can be a sign of burnout • The guilt of choosing between caregiving and your own life • Why children should not automatically be hidden from dementia • How culture and family expectations shape caregiving • Why caregivers need more than awareness and good intentions Whether you are caring for a parent, spouse, grandparent, friend, neighbour, or loved one living with dementia, this conversation is a reminder that caregivers are people too. They are not a given. And they should not have to break before anyone notices they need help. Learn more at:⁠⁠ ⁠⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠ https://compassionincaregiving.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. 1:14:37
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC5BNzVDNTJBQkJBOTRGRUMw

Caregivers Are Not a Given: Why the System Is Breaking (with Stephanie Muskat) | EP40

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. Katie explains how diagnosis helped her understand that Mike had not chosen to leave their family. The disease had taken him away. The conversation also explores one of the hardest realities many caregivers face: when home is no longer the safest place. Katie speaks honestly about the guilt, grief, and gratitude that came with moving Mike into a skilled nursing facility, and why care placement should not be understood as failure. Sometimes love means recognizing that one person cannot safely carry everything alone. Andrew and Katie also talk about caregiver burnout, the financial and emotional cost of care, the need for better navigation and support, and why caregivers need to be seen as essential members of the care team. Katie shares practical advice for families newly facing a diagnosis, including who to tell, how to begin legal and financial planning, and why connecting with trusted advocacy organizations matters. 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 • The difference between FTD and Alzheimer’s disease • 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 • Why care placement is not failure • How diagnosis gave Katie back her love story with Mike • What caregivers need to know after a diagnosis • Why caregiver wellbeing directly affects the person living with dementia • 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 ——— 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. 1:33:49
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC44OUQ3NTI3QjhGMTRCODVD

Dementia Before 30: When FTD Changes Everything (with Katie Brandt) | EP39

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Want more informative and impactful demetia content? Check out The Dementia Collective for more information.