The Dementia Collective #35 is Live!

This episode can be found HERE

What if dementia is not only a medical condition, but a story shaped by who gets to tell it?

In this episode, Andrew Karesa sits down with novelist and screenwriter Alfredo Botello to explore caregiving, storytelling, and the power of representation.

Alfredo shares his experience caring for his mother and how that journey influenced his writing. From the private realities of family caregiving to the public portrayals of dementia in film and media, the conversation examines the tension between lived experience and cultural narrative.

Together, Andrew and Alfredo ask a deeper question: who controls the story of dementia, and how does that shape how society responds to it?

They discuss humor and heartbreak, the emotional contradictions of caregiving, and the responsibility that comes with writing about cognitive change. Alfredo reflects on how storytelling can either flatten people into stereotypes or preserve their complexity.

The conversation also moves into the gap between what families experience and what audiences are shown. What gets dramatized? What gets softened? What gets left out entirely? And how does that influence stigma, understanding, and policy?

Along the way, they consider how stories can restore dignity, challenge assumptions, and give caregivers language for what often feels impossible to explain.

In this episode:
• How caregiving reshaped Alfredo’s understanding of story
• The difference between lived experience and public portrayal
• Why humor matters in dementia conversations
• The tension between vulnerability and representation
• How media influences stigma and perception
• What families wish more people understood
• The responsibility of writers telling dementia stories
• Where storytelling can help, and where it can harm
• How narrative control shapes cultural understanding

Whether you are a caregiver, a storyteller, or someone trying to understand dementia beyond headlines and tropes, this conversation invites you to reconsider not just what the story is, but who is telling it.

Join 'The Village' on Patreon

If you believe in what we are building, I’m inviting you to stand with us. For only $5 per month (less than a Starbucks coffee), you can help us grow this movement, reach more families, and continue breaking the stigma around dementia care.

Your support truly makes a difference.

Village Members receive:

• Early access to new episodes

• The ability to submit questions for upcoming guests

• Occasional behind the scenes updates or voice memos from the host

• Optional name listing on our website’s “Thank You Wall”

This work cannot be done alone. Every conversation, every story, and every episode helps shift how the world understands dementia. Your five dollars directly strengthens that impact.

Join The Village HERE and help us bring more voices, more stories, and more hope to caregivers everywhere.

Don’t Forget to Sign Up for blueBell Connect

We are excited to announce that our patent-pending tool, blueBell Connect is now available for caregivers to sign up. 

blueBell Connect provides caregivers clinically valid, personally specific and culturally appropriate support recommendations in your daily care for individuals living with dementia. 

Click HERE for a blueBell Connect brochure

For more information, check out bluebellconnect.ca or email [email protected]

Click HERE to sign up