Last Wednesday, Columbia Medical Center’s Division of Narrative Medicine held a talk with cardiologist Dr. Sandeep Juahar. He detailed his new memoir, introducing his brilliant father’s descent into dementia and the science and experience of searching for answers. 

On Wednesday, February 7, Dr. Sandeep Juahar, a cardiologist and best-selling author, joined Columbia Medical Center’s Narrative Medicine Rounds to discuss his 2023 book, “My Father’s Brain.” His book is grounded in the science behind one’s decay into dementia, but is more importantly a memoir from the perspective of a loved one trying to understand Alzheimer’s as a disease. 

I had never heard of Narrative Medicine, and I am not a scientist myself, however, I found this talk to be open and engaging to the public. Narrative Medicine is a field started in 2001  at Columbia University, and sits at the intersection of the humanities, arts, clinical practice, and healthcare justice. It was introduced as pushing for more equitable and effective “person-centered healthcare.” 

Dr. Juahar is a respected cardiologist by practice, but found himself stumped and frustrated as his father’s disease progressed. He first noticed this descent when his father, a highly renowned plant geneticist, called and detailed that he could not keep up with writing two papers a month anymore. This was a man who taught his children that “non-science is nonsense,” and who wrote many textbooks and over a hundred other papers. Dr. Juahar started to see a shift in his father’s behavior though. His father would go to the lab for hours without getting much done, fall for manipulative TV advertising, and even got lost once while driving. Dr. Juahar and his brother found themselves frustrated and looking for any other possible explanation for his behavior. Now, he understands that these were early signs of dementia.

His memoir details the impact dementia had on their relationship as the disease progressed, especially once he started to accept the condition of his father. Dementia often leads to erratic and hard-to-explain behavior in patients. My grandmother has also declined due to dementia within the past three years, so this is an element of the talk I deeply resonated with. 

During his talk, Dr. Juahar gave a “neurological blueprint for what happens when a family member develops dementia” By lacing in his own experiences,  he made this talk highly valuable for people trying to understand how the disease is affecting someone in their own life. I resonated with his struggles of caregiving, having faced many similar experiences with my grandmother. Seeing someone who was once so bright and so caring struggle with basic awareness is an extremely frustrating and saddening experience. Societal awareness for dementia pushes for more research. However, a larger support system is missing. This book is that resource he wishes he had when first experiencing his father’s brain. 

Dementia, he argued, progresses fast in part because it is socially isolating. After his diagnosis and progression further into disease, Dr. Juahar’s father lost touch with many of his friends. He further argued that this is made worse due to social structures like the nuclear family as well as a lack of healthcare and support. Dementia support costs $200 billion a year, yet only 5% of that is covered by Medicare.

Before the Q&A session, he concluded the talk by describing that his father’s diagnosis and eventual passing from Alzheimer’s made him a more understanding caregiver in his own practice, as he learned more about meeting patients where they are. Neurodegeneration can be extremely frustrating, especially due to how hard they are to understand, but more empathy can help everybody involved. Towards the end of his life, things that made his father content were as simple as a bowl of ice cream or seeing his grandkids, an experience echoed by my own grandmother. 

With my own experience of navigating my grandmother’s diagnosis and caring for her, I deeply resonated with this talk and Dr. Juahar’s approach of combining his personal experience with science. His memoir provides an important resource for the many people who have a loved one impacted with dementia, as well as those who struggle with the lack of resources given to elderly caregiving. 

The Narrative Medicine Rounds commence on the first Wednesday of each month. The book “My Father’s Brain: Life in the Shadow of Alzheimer’s” can be found here on Sandeep Juahar’s website. The talk was also uploaded on YouTube if you missed it. Look for Bwog’s weekly science fair for more science events on campus like this one.

Illustration via Pixabay