167: The 'D' Word with Pete Hill - Episode 167

167: The 'D' Word with Pete Hill - Episode 167

What makes a recovery story truly inspiring? On The 'D' Word, the focus is on dementia, and this week’s conversation with Sam Simon shows how diagnosis doesn’t have to mean the end of a meaningful life. Host Pete Hill chats with Sam, who lives with early stage Alzheimer’s and has turned his experience into a one-man play and a book, *Dementia Man – An Existential Journey*.

Sam talks frankly about the long, confusing road to diagnosis, from getting lost while driving to moments where he felt he “exited the present” and was “floating in space” while trying to remember things. He’s clear about the impact: “I will never be a lesser person. I may be different, but I won’t be lesser.” You’ll hear how family, faith, and community have become his key supports.

Sam speaks warmly about his wife Susan, once his care partner during her breast cancer, now his “cognitive navigator” in the theatre, sitting in the front row with the script in case he loses his place. It’s honest, occasionally funny, and very human.

The conversation also tackles language, as Sam explains why he wants the term “dementia” retired in favour of “cognitive disorder”, arguing that dementia is “literally an adjective associated with a crazy, insane-looking individual.” He contrasts this with how we talk about cancer, where type and cause are part of everyday discussion. Pete and Sam don’t shy away from the tough stuff, including assisted suicide, care costs, and the pressure some feel to see themselves as a burden.

Yet the tone stays hopeful, with a strong emphasis on staying socially engaged, creatively active, and seeing life with the condition as still worth living. If you’re interested in illness, identity, and how art can hold all the messy bits of a diagnosis, this conversation might leave you asking what purpose you’d want to hold on to in your own hardest moments.