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 ——— 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.
