Book Club and Review: The Problem of Alzheimer's
Buckle up guys, this one was a lot. The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It by Jason Karlawish.
For those of you who don't know, Dr. Karlawish is co-director of Penn Memory Center and a professor of medicine, medical ethics, health policy, and neurology.
This book is a comprehensive look at Alzheimer's disease, how it came to be discovered by humans, how it has evolved, how we developed the terminology, and, my favorite part - what the practical implications of research and health care have on patients today.
From Alois Alzheimer's discovery to the families and individuals who banded together to create the Alzheimer's Association to today, it paints a full picture that is accompanied by Dr. Karlawish's expert opinion as someone who diagnoses and manages the care of many dementia patients in Philadelphia.
Depiction of Alzheimer's
Quite frankly, I feel unqualified to cast an opinion on this, as my experience is with a few loved ones who have or are living with the disease. Dr. Karlawish’s portrayal is much more informed.
However, I will say that the stories relayed by him of his patients ring true to everything I know and have learned about Alzheimer's in my decade-plus of advocating for this disease.
Where are we
We are within a healthcare system of our own making in which actionable solutions for Alzheimer's disease are sometimes not practical or not profitable, both of which impede our ability to move forward in combatting the disease.
At a recent meeting of the contributors and moderators of this site, we discussed an antiquated idea that we don't have the scientific capabilities to image plaques in the brain. That morning, I had finished a section of the book that talks about the first-ever radioactive compound that would allow amyloid to show up on a scan. Why do we not know about it? Because it did not make it to market for a confluence of reasons.
Where have we been
A fascinating aspect of this book was to see the disruptions to scientific breakthroughs that happened as a result of geopolitical activities, specifically war. Several German scientists were working on Alzheimer's in the lead-up to World War II. These efforts were obviously waylaid by the world submerging into chaos.
Where can we go today
This is a particularly awesome part of Dr. Karlawish's book. I say this because, with each action, I have my eye on the prize of a cure. I ask elected officials to give money to it, I ask individuals to fundraise for it, and I ask companies to support fundraising events to get closer to finding it.
Given the complexities of the disease, that's not something that's on the docket for tomorrow. And while finding a cure will forever be my focus, there are actions that we can advocate for and undertake in our own lives today to make the 6 million Americans living with Alzheimer's disease less disenfranchised in our world.
What are those things
Embracing prescriptions of a different kind in the meantime. Dr. Karlawish discusses how he will prescribe adult daycare to keep individuals social and moving, two things that directly impact the progress of the disease.
Utilizing technology, cautiously
A story from the book related to my Mom's experience was about a young man who noticed his Dad was a bit too far and too long on his regular walk. While dad uses his cell phone to navigate if he gets lost, his son also uses it to keep tabs. He drove by his Dad and said something like, "Well, look who we have here. Want a ride home?" As though running into him was happenstance.
Our loved ones suffering from Alzheimer's are going to change. They are going to become less capable of being autonomous, sure, but it doesn't mean that they are incapable of participating in a fulfilling life with modifications.
If we can make space for them to go through this journey with safeguards in place, we may just be able to best Alzheimer's at its own game while we await the coveted cure.
Are you interested in sharing your caregiving tips with the community?