The Dementia Collective #44 is Live!

This episode can be found HERE

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 with early-onset Alzheimer’s disease, the grief that followed, and how decades later she finally found the words to tell his story.

Cindy shares the early signs that something was changing, the heartbreak of watching her father struggle to retrieve everyday words, and why a simple grocery store trip searching for the word “croutons” became the story that inspired her memoir. She reflects on caring for her father from across the country, writing him letters she knew he could no longer read, and the guilt that often accompanies long-distance caregiving.

This is a conversation about Alzheimer’s disease, language, grief, caregiving, memory, family, and the extraordinary power of stories to preserve the people we love.

In this episode:

• The early signs of her father’s young-onset Alzheimer’s disease
• How the logopenic variant of Alzheimer’s affects language and word finding
• The unforgettable “crouton” story that inspired Finding the Right Words
• Why she continued writing letters her father could no longer read
• The emotional reality of long-distance caregiving
• What she wishes she had known about communicating beyond words
• The power of music, touch, animals, and shared experiences in dementia care
• The language of dementia and why words like “battle” and “agitation” deserve more careful thought
• Why writing became an act of preservation and helped her recover memories of her father
• What reaching the same age as her father’s diagnosis taught her about purpose, resilience, and hope

Whether you’re living with dementia, supporting someone you love, working in healthcare, or simply trying to understand the human experience behind Alzheimer’s disease, this conversation is a reminder that even when words become harder to find, love, dignity, and connection can endure.

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