Faces gaze across the room with smiles and a warm touch of nostalgia. Gatherings bring people together despite their differences. All but one. Cell death takes over the brain, eating up core memories with family and friends. These memories of happiness, sorrow, anxiety, and confusion are digested by an unpredictable disease.
Conditions like Alzheimer’s and Dementia are known to affect more than just the patient. What may start as forgetting people’s birthdays may have more detrimental consequences down the road, not just for the patient, but for their family as well.
Six years ago, my uncle’s neurocognitive decline left a lasting mark on my nephew. My uncle was in the kitchen with my nephew. He had been cooking some food in the pressure cooker when he forgot about it and walked away to his bedroom. My nephew, four years old at the time, stood in front of the stove watching the cooker whistle. A few minutes later, his mom and aunt heard a loud burst, and my nephew was crying on the ground. His legs on fire, covered in boils, and steam rushing out of the hot water that spilled, covering his legs, his arms, and his torso, leaving not one, but four victims of dementia.
My uncle, confused by the situation at present, rushed to aid, seeing my nephew down on the ground, but was immediately sent away, given the risk he posed. My aunt and cousin tended to my nephew as they tried to make sense of the situation and my uncle’s cognitive function. Typically, in America, many of these individuals who have severe dementia-like illnesses are sent to nursing homes for more detailed care and attention to their needs. In Indian culture, however, nursing homes are considered taboo regardless of the reason for sending a family member there.
To better understand how dementia affects patients, I volunteered at elderly homes in Houston. To my surprise, many of the individuals who were sent there because of dementia were very lonely and depressed. Even though they did not recall every encounter with their visitors and did not remember some of their own family, they often felt abandoned. When they had company, there was a sense of freshness and excitement that they were being thought about.
As a result, a couple of friends and I decided to host game days with the patients to encourage interaction and boost positive emotions. The residents jumped at the idea and quickly found themselves chatting with others, playing bingo, cards, and chess. I quickly sat myself at a table with an empty seat and began introducing myself.
I remember when I introduced myself to a group of older ladies, they all lit up, excited to have new and young faces in the home. While all the residents were very friendly and vocal, one resident at my table seemed distant. Her name was Suzzie. I was not sure if her behavior was part of her normal affect or she was disturbed by our presence. As we began playing rummy, we all put down our cards, except Suzzie. She asked, “What are we doing?” The older gentleman next to her repeated the instructions.
It seemed odd because we went through all the details, and she confirmed she had no questions. Later that evening, the gentleman sat next to me and said, “Her memory is getting worse. She forgets what she is doing in the middle of her activities." It made me start to realize all the things we take for granted. For her, everything was agitating because she would forget. Just like the game, she often forgot if she had showered and would shower two to three times back to back despite having wet hair and a wet towel as proof of her shower. It also made me realize the power of these nursing homes in bringing together individuals who acknowledge these gaps, support each other, and receive the extra attention they need to function.
After my visit, I started to analyze individuals in my community, identify signs of memory loss, and create safe environments for similar people. It was intriguing to see how individuals affected by dementia react to repeated stories, comments, and people. At one of my repeat visits, I met Suzzie’s daughter and learned the impact the dementia had on her. Her daughter would take off work early twice a week, unsure of what she would be greeted with: an excited mother with love to shower or a stranger who does not recognize her and asks to be left alone. While Suzzie had no control or recollection of these events, the daughter had to live with the emotional stress that came with loving and caring for her mother. Suzzie’s daughter was strong. She would show her pictures of the times they spent together, with little hope that she would recall. My heart hoped that she’d instantly see her daughter’s pictures and remember everything, but, more times than not, this was the unfathomable truth.
Suzzie taught me so much about the brain. More than science and medicine, she taught me to appreciate what we have. I learned to live in the moment, taking everything in, creating memories, and cherishing my relationships.
Since these experiences, I have developed a strong interest in understanding the brain’s mechanisms and how it affects our full body. I had never witnessed the spectrum of dementia and the various impacts it has on the self and family. As I continue to volunteer and learn more about the disease and the community, I have started doing research on neurodegenerative disorders, learning more about indicators for disease, and looking into ways to minimize effects and improve outcomes.
As an incoming freshman at Johns Hopkins, I will be expanding my knowledge by taking a class titled: Peripheral Nerves in Health and Disease. Through this class, I will have the opportunity to learn more about these conditions and learn about new developments in the field. As an avid researcher, I hope to continue my passion for neurocognitive decline by identifying novel biomarkers for early detection of neurodegenerative diseases while advancing the way physicians map brain cell death. I would like to join one of the many labs at JHU to further research ways that we as scientists can initiate the reversal of brain death and stop the harmful effects of neurocognitive diseases. In the coming years, I will gain the proper training and resources needed to become a doctor who can better address the medical, social, and emotional needs of those affected by Alzheimer’s and Dementia related illnesses.