The Dementia Collective #43 is Live!

This episode can be found HERE

What does it mean to keep living fully after an Alzheimer’s diagnosis, especially when the world so often treats dementia as the end of a person’s life?

In this episode, Andrew Karesa sits down with Samuel Simon, playwright, former consumer advocate, and the creator of Dementia Man. After a lifelong career fighting for the public interest, Sam is now using theatre to challenge one of the most damaging ideas surrounding dementia: that a diagnosis makes a person less human, less capable, or less worthy of a meaningful future.

Sam shares his own experience living with Alzheimer’s, from the early signs that something was changing to the word-finding difficulties, disorientation, and adjustments that have become part of everyday life. He speaks honestly about the fear dementia can create, but also about why fear should not be allowed to decide what comes next.

At the centre of this conversation is Sam’s strong opposition to assisted dying for people living with cognitive decline. He explains why he believes a dementia diagnosis should not become a reason for someone to feel like a burden, give up on their future, or conclude that their life is no longer worth living.

In this episode:

• Why he rejects the idea that dementia should be treated like a death sentence

• His experience with early cognitive changes, memory loss, and word-finding challenges

• The “nothingness place” he experienced while trying to find words

• Why stigma can make people with dementia feel excluded from ordinary life

• How practical supports can help people remain independent for longer

• What improv’s “yes, and” approach can teach caregivers and families

• Why Sam speaks out against assisted dying for people with Alzheimer’s

• The danger of believing you have become a burden to your family

• How community, creativity, exercise, friendship, and purpose continue to shape his life

• Why people living with dementia must remain part of the conversation about their own futures

Whether you are living with dementia, supporting someone you love, working in care, or trying to better understand what an Alzheimer’s diagnosis can mean, this conversation offers a powerful reminder:

Dementia changes life, but it does not erase personhood. And it does not mean life is over.

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

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