149 "What worries me most is the psychological impact"

The Alzheimer's Podcast

In this episode, we're picking up where we left off in episode 148: “I felt I had been harmed” with guest Jamie Tyrone.

Jamie is the author of Fighting for My Life: How to thrive in the shadow of Alzheimer's. She unexpectedly found out about her risk of developing Alzheimer's disease in the course of genetic testing for something else. As you can imagine, that had a significant impact on her life.

More about that in a minute. Meanwhile, fast-forward to February 2021. Phil Gutis, who is our Assistant Sherpa on the show and was diagnosed with young onset Alzheimer's five years ago, landed us an interview with Dr Jason Karlawish, who is both Co-Director of the Penn Memory Center and part of Phil's neurology team.

Dr Karlawish came on the pod to discuss his new book The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. That conversation, featured in episodes 146: “It's a disease of autonomy” and 147: Safe, Social, and Engaged covered a lot of ground, as the title of the book suggests it would. One of the most intriguing ideas in the book is of creating a new diagnosis called "pre-clinical Alzheimer's.”

Being able to diagnose people with "pre-clinical Alzheimer's” means they wouldn't be showing any symptoms of the disease, but rather that they have genetic markers indicating they’ll likely develop it within their lifetime. People could live with a diagnosis of "pre-clinical Alzheimer's” for 30, 40, 50 years prior to showing symptoms.

Now, back to Jamie Tyrone. She's been living with the information she has a significantly high risk of developing Alzheimer's disease for 11 years now. So of course we wanted to hear her thoughts on this idea of a "pre-clinical Alzheimer's” diagnosis.

In this episode, Phil and I have a conversation with Jamie about the psychological impact of genetic testing and knowing you have a diagnosis, or are at a significantly higher chance of eventually getting the dreaded diagnosis. The conversation got more real and raw than any of us anticipated.

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