The Power of Early Diagnosis and Advocacy in Caregiving’s Detective Work with Katie Brandt

Nicole Will
Oct 8
4 min read

Best caregiver podcast caregiver support dementia alzheimers

The Power of Early Diagnosis and Advocacy in Caregiving’s Detective Work with Katie Brandt, Director of Caregiver Support Services and Public Relations at the Massachusetts General Hospital Frontotemporal Disorders Unit & Global Advocate

What do you do when the life you imagined is replaced by one you never saw coming? Katie Brandt’s husband was just 29 when he was diagnosed with frontotemporal degeneration. In a moment, her world that was full of plans, career dreams, and early marriage, shifted into something no one prepares you for. Katie turned heartbreak into advocacy, she found purpose in systems that once failed her, and her story has become a guiding light for thousands of families facing young-onset dementia.

My guest is Katie Brandt, Director of Caregiver Support Services and Public Relations at the Massachusetts General Hospital Frontotemporal Disorders Unit, and Founder & CEO of Katie Brandt Advocacy. Her leadership comes from lived experience. She cared for her husband during his journey with FTD and now supports her father, who lives with Alzheimer’s.

Her leadership has reached the national stage as Co-Chair of the National Alzheimer’s Project Act (NAPA) Advisory Council, Director of Engagement for the ALLFTD Participant & Family Engagement Board, and as keynote speaker for the 2025 AFTD Education Conference. Over the past fifteen years, she has become a trusted voice for families, professionals, and researchers working toward a more just and compassionate dementia landscape.

In this conversation, we talk about what it means to become a “caregiver detective”, the quiet observer, the record keeper, the advocate who pieces together the truth when something feels off. We explore how early and accurate diagnosis brings dignity, how research becomes more human when it includes caregiver voices, the financial strain that impact caregivers and why supporting caregivers isn’t just compassionate, it’s strategic. Katie shares the lessons she’s learned through love, loss, and leadership, and how her belief that “love will end FTD” continues to guide her work and the families she serves.

Listen to our episode HERE.

To learn more, visit: www.FTDboston.org

To buys tickets and learn more about A Night with the Arts for FTD, an annual gala on Oct. 24th, featuring the Sermos Memorial Art Show, benefitting the clinical research program in the MGH Frontotemporal Disorders Unit. Visit HERE.

The MGH Frontotemporal Disorders Unit hosts From Care to Cure podcast. Listen HERE.

To connect with Katie, visit: KatieBrandt.org

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About Katie Brandt

Katie Brandt is the Director of Caregiver Support Services and Public Relations at the Massachusetts General Hospital Frontotemporal Disorders Unit. She leads support programs, education, and community engagement initiatives aimed at improving quality of life for families affected by FTD, young-onset dementia, and related disorders. Katie draws on deeply personal lived experience—having cared for her husband during his years with FTD and supporting her father through Alzheimer’s—to inform her advocacy and program design. She was co-chair of the National Alzheimer’s Project Act Advisory Council on Alzheimer’s Research, Care, and Services, where she contributed to shaping national policy around family-centered dementia care and health equity, shining a spotlight on the young-onset dementia experience. Katie also directs the engagement efforts of the ALLFTD Participant & Family Engagement Board, amplifying caregiver and patient perspectives to guide research and service design in the largest longitudinal study of FTD in the world. With more than a decade facilitating caregiver support groups, she brings nuanced insights into the emotional and practical challenges of caring for people living with dementia. In her speaking and media work, through her consultancy, Katie Brandt Advocacy, LLC, Katie shares caregiving advice and resilience strategies, most recently keynoting the 2025 AFTD Education Conference, with messages of hope and empowerment for caregivers.

Katie Brandt Advocacy, LLC

Katie Brandt is the Founder and CEO of Katie Brandt Advocacy, LLC, a consultancy aimed at illuminating the authentic voice to improve healthcare, research and services for Alzheimer’s, young-onset dementias and rare disease. Each presentation integrates professional expertise and evidence-informed curricula with the lived experience, empowering the authentic voice of caregivers and persons living with a diagnosis.

Katie Brandt Advocacy, LLC offers packaged and unique experiences for companies, organizations and patient advocacy groups to empower others with the knowledge and experience that Katie has acquired with over fifteen years of experience. Whether it is training for professional staff, guidance for family caregivers, insight for clinicians or awareness for policy makers, Katie’s talks and trainings offer opportunities for healing and hope.

Learn more at KatieBrandt.org.

IG: @KatieBrandt6

LinkedIn: www.linkedin.com/in/katiedianebrandt/

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We are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. willGather has taken care in selecting its speakers but the opinions of our speakers are theirs alone. Thank you for your continued interest in our podcasts.