Henry Respert Alzheimer's and Dementia Awareness Scholarship

I don’t believe in magic. At least thats what I used to think. The day I saw my depressed father who suffered from the onset of dementia, once surrounded by clouds of gloom beam as he spoke of his aspirations, I became a believer. The effects of magic, a tiny anxiety pill called Ativan, taken only to help my father ease through a simple procedure, completely changed my father in that moment. Some might say “that’s just modern medicine,” to me it was everything, it was magic. It was my thirteenth birthday when my dad had his first stroke. As I sat at his hospital bedside, my only wish on that birthday was for my father to live. Strokes and high blood pressure seemed to conquer my lineage and the thought of it unveiled anxiety in my thirteen year old body. My blood pressure spiked at the sight of a blood pressure machine as the apprehension built inside me. Doctors started to consider the unusual event that an underweight thirteen year old girl could have high blood pressure. From my trembling hands to my constant headaches, I kept it to myself, except for the occasions I would confide in my father that would comfort me. Being from an African household, often times it was reiterated that mental health was an “American” thing, a weakness. I coped by focusing on school, volunteering, joining my high school’s medical program, and taking care of my dad. It seemed once he was cleared of physical aliments he was too far gone mentally to ever recover. The constant strokes caused depression and the onset of dementia in my father. My once ambitious father slipped through my fingers like quicksand, until he was unrecognizable. He started giving up slowly becoming non compliant. I remember having to put his medications in his mouth and making sure he swallowed it. Making sure he wouldn’t flush the very thing keeping him alive down the toilet. And I mean that literally. So hopeless, he made no effort to improve. A part of me used to blame him, but I know better. I know that mental alimnets can be crippling physically. Last November, my father suffered one last stroke and met his end. On my 17th birthday, I cried realizing my special day without the man I loved the most was anything but special. Today I realize that mental/ cognitive health and physical health coexist, always. If one aspect of those two things is jeopardized, equilibrium will cease to exist in our intricate systems. From my spiking blood pressure induced by emotions to my dad’s deteriorating state, one of the most important things to me in life is mental health. When I think back to the time my dad took Ativan to go through an mri, seeing the effects it had on him, how he lit up our home in an instant, I am dumbfounded . With the power to change mental state like magic, I knew I wanted to be a magician. The experiences I’ve had surrounding mental health has solidified my desire to become a Psychiatrist. I want to help talk people through their problems and find solutions that work. Solutions that save lives. Back home in Sierra Leone West Africa, the whole country only has one practicing psychiatrist. The lack of communal concern in the Black and African American community regarding mental health fills me with indignation. When I pursue psychiatry I wont forget about my people back home. Now I am a certified nursing assistant also took the initiative to intern at my local hospital with the COPE health scholars program, where I shadowed nurses and doctors, discovering what I really want out of medicine. Currently, I am also trying to get into research focusing on the effect strokes have on the brain in terms of dementia. I make it a habit to challenge my self because I know I can do better, be better. Right now I am setting my foundation for a career in medicine. A foundation to a long road, the road to becoming a magician.

I often see my father with his head in his hands induced by a quiet spell haunted by the pain of his mother whom he repeatedly says is slipping away because of her dementia. "She's slowly disappearing," he says. I didn't know my grandmother until I was about 15 years old. She had just lost her husband of 60 years to a severe case of diabetes. She was alone and needed comfort from the nearest family she had, so she came to live with us. When I was young I thought it was irritating how she would consistently and only repeat the same three stories about my dad and how he loved examining her car when he was five years old, the story of how she wrote a letter to Barack Obama, and how she loved making paper flowers for her coworkers when she was younger. My dad said she used to be the sharpest, strongest woman he knew, and she was never like how she is now. All I saw was the repetition. Over time, I began to understand. Through her stories, though repeated, she held her family, her freedom, voice, and creativity close to her heart. It was heartbreaking to see my dad lose a part of his mother, but I was fascinated by the inner workings of the brain. My grandmother kept her identity through three random life stories yet couldn't remember my name or where I lived. During COVID-19, I was fortunate to receive a position at a lab where I was able to learn about the use of stem cell therapies to better understand Alzheimer's disease and dementia. My specific project was to understand the effect of paraquat, a toxic chemical and pesticide, on the brain and how it is commonly associated with triggering early-onset Alzheimer's and dementia. This research kickstarted my interest in the fascinating subject. When 60 Minutes released an episode about a large population of central South Americans who were contracting the disease in their early 30s, I dove deeper into the research. From a research perspective, it was exciting to see the parallels between the pesticide paraquat and South American farmers contracting Alzheimer's. Moreover, it was fascinating how the brain can change so drastically in such a short period, but also to never know what specifically triggers the onset of these neurodegenerative diseases in specific cases. There is also no standing cure. As I sat in on a Front Row talk at Scripps Institute this past summer, I listened to Jeffery Kelly give a presentation on how the alteration of gene formation can increase the risk of neurodegenerative diseases and how genetic editing and bioconstruction of new genes can serve as a prolonged preventative treatment for those who are "at risk." The presentation opened the door for new questions and curiosities for me. Who is "at risk" if only a handful of reasons for Alzheimer's onset are known? Is anyone sampling large groups of people and their genetic formation to assess the likelihood of getting dementia or Alzheimer's from youth to present to track societal, genetic, and environmental factors en masse? It's scary to imagine that one day I could be like my grandmother, and in less than a year, everything I ever knew was taken away from me. As I pursue my bachelor's degree and dream of obtaining an MD/PhD with a background in Biomedical Engineering and Global Health, I keep my interest in understanding and working with neurodegenerative diseases close at heart because one day I will contribute to this worldwide challenge of finding a cure. One day, It will happen, and I want to be there when it does.

Growing up, my peers would talk about their grandparents like they were any normal figure in their lives. “Oh, my grandma’s picking me up early today to get ice cream” or “Ugh, I have to go to my nana’s house today after school, it’s going to be so boring.” As a child of two immigrants from opposite sides of the globe, I never had that privilege. Kids around me seeing their grandparents daily was not something I could relate to, since all four of mine were overseas. If I was lucky, I would see only my grandmothers in the summer every few years. But ever since second grade, I had basically lost one of my grandmothers to Alzheimer’s disease. My halmoni (grandmother in Korean) was a wise and soft spoken woman. I have fond memories of her teaching me Korean phrases and making me pajeon (Korean pancakes) when I was young. We both loved each other dearly; I would cherish every minute I could spend with her. I knew I was on borrowed time, and she loved to see her youngest daughter’s children. My mom was the only one out of five kids who married outside of her culture and had more than one child. When I was five, my grandfather passed away. We were living in Canada at the moment, and my mother could not make it in time for the funeral. My grandma losing her spouse was a factor that caused the initial stages of her Alzheimer’s disease. Losing a loved one by passing away and losing a loved one by Alzheimer’s can be quite similar. It was heartbreaking to visit my grandmother as I got older, because she was not the same person to me. In her early stages, she still recognized my mom, but she didn’t know she was married; even though she had been married for over 10 years. She had no idea who my sister and I were; we were unrecognizable strangers to her. We vanished as people from her memory, and that was devastating to me that she didn’t know who I was. Her conditions have only exacerbated since then. She lived with my uncle, but started to have dementia. She could not take care of herself; she lost weight and had no motivation to do anything. When my uncle, aunt, and cousin had to leave the house during the day for work and school, they fretted over whether she could handle being home by herself without any attentive care. Until one day, she left the apartment and began to wander mindlessly. Fortunately, the security guard of the building found her and guided her home safely before she had a chance to get on the streets. This was a wake-up call for my mom and her siblings that it was time to send her to a nursing home. My mom felt very guilty and shed many tears over this. Halmoni’s one wish to her children was for them to never put her in a nursing facility no matter her conditions, and they were going against her wishes that she could not even comprehend herself. Once she was sent to the care facility, she was so upset she refused to speak to my uncle and aunts. Sadly, none of our family could attend to her all day and make sure she was cared for, so as egregious as this was, it was the best and safest option for her. Once she was sent to the home, she was so upset she didn’t speak to my uncle and aunts. When Covid came, the nursing home refused to let in visitors, due to Korea’s strict quarantining policies and nursing homes being at higher risk for the virus. She was alone for almost one and a half years, none of our family could enter the nursing home to see her. When Covid started to settle down, my uncle was barely allowed to see her through the glass window of the door to her room. It’s been almost ten years since I’ve seen my grandmother. It always breaks my heart when I think about how she’s doing at the moment, and that she could not be there to see me grow and accomplish things in my school and life like other people’s grandparents can. She can’t see me graduate high school, meet my dearest friends and loved ones, learn about my interests, watch me go to college, get a career, and even maybe get married in the future like other grandparents can. After my dad’s mother passed away in sixth grade, my halmoni was the last grandparent I had, but it didn’t really feel like she was there. Having grandparents was something I truly envied; it is a hole in my heart that could never be filled. A big thing I learned about Alzheimer’s disease was that awareness is just as important as treatment. Knowing how it can alter the lives of the individuals and their families affected by it is extremely important. Although there is no cure, more people should be invested in learning about the disease itself and watch out for early symptoms in their elderly family members. Alzheimer’s disease has also inspired my career pathway. In university, I plan on majoring in neuroscience to learn more about Alzheimer’s and other brain disorders. I want to pursue a career in medicine, specifically neurology in order to research most brain disorders and find more answers on this condition. My personal connection to Alzheimer’s has motivated me to work with people on this topic and make an effort to improve people's lives.

How would you feel if your grandmother believes your mom is her old college roomate or does not recognize her grandkids? I got to witness this with my own grandmother. The first signs of decline were seen at my college graduation. From forgetting what she ordered at my graduation dinner to misplacing Christmas money to waking up in the middle of the night thinking she was kidnapped because her surroundings were unfamiliar. As the progression of my grandmother's dementia continued, I witnessed her mind becoming more fragmented and her connection to reality slipping away. It was particularly painful to see her confuse my mother with her old college roommate, as it underscored the extent of her memory loss and the profound impact that dementia had on her cognition. Equally heartbreaking was the confusion she experienced when looking at her own grandkids, mistaking them for unfamiliar faces or attributing them to someone else's family. These daily encounters with her altered perception and memory were emotionally challenging for our family. It required us to develop a deep reservoir of patience, compassion, and understanding. We realized that correcting or challenging her beliefs would only cause further distress, so we learned to approach these situations with sensitivity and redirect the conversation gently, focusing on shared memories or engaging in activities that brought her comfort. It became evident that creating a calm and familiar environment was crucial in helping alleviate her confusion and anxiety. We maintained a consistent routine, surrounded her with familiar objects and photographs, and played music that held personal significance. These efforts aimed to anchor her to a sense of familiarity and preserve moments of connection. Beyond our immediate family, witnessing the impact of dementia on my grandmother shed light on the wider community's need for education, awareness, and support. We became dedicated to raising awareness about the challenges faced by individuals with dementia and their families, as well as advocating for improved resources and care. I realized that there was a significant gap in understanding and empathy surrounding dementia, leading to stigma and isolation for those affected. I sought opportunities to participate in community events, share personal experiences, and engage with organizations that focused on dementia support. Through my grandmother's journey, I have learned valuable lessons about resilience, adaptability, and the importance of cherishing the present moment. I have developed a deep appreciation for the strength and dedication of caregivers who tirelessly support their loved ones through the challenges of dementia. Witnessing their unwavering commitment has inspired me to consider a future in healthcare, where I can contribute to research, advocacy, and compassionate care for individuals with dementia. In conclusion, the impact of dementia on my grandmother and our family has been an emotional rollercoaster, filled with heartache and moments of profound connection. It has highlighted the need for increased awareness, support, and education surrounding dementia. While the journey has been challenging, it has also provided an opportunity for personal growth, deepened empathy, and a sense of purpose in contributing to a more compassionate society. I am committed to making a difference by raising awareness, providing support, and advocating for the dignity and well-being of individuals living with dementia and their families.

Eleven days before my sixteenth birthday, I said goodbye to my Grandpapa, whose life was deeply affected by dementia. Unfortunately, this is a disease my family knows too well. It was only after his passing that I realized the lack of interventions to slow down the progression of dementia in its middle stages. This simple yet complex question ignited a strong determination in me to bring about meaningful change in society with hopes of working with the federal government in studying dementia as my career. Witnessing the challenges faced by my own family members affected by dementia started a deep sense of empathy and a desire to contribute to finding effective treatments and support systems for those affected. When I was eight, we visited my great-grandparents, and little did I know that this innocent encounter would mark the beginning of a poignant journey. My Grandpapa's warm smile greeted me as usual, but something felt different this time. His repetitive questions about my school grade hinted at a puzzling change. Unbeknownst to me, this was the onset of his battle with dementia, setting off a chain of events that would deeply impact my family. As time passed, my Grandpapa's memory lapses worsened, and now I can identify that he was facing the early stages of dementia. It was disheartening to see him ask the same question repeatedly, and my Grandmama's laughter, though soothing, could not conceal the gravity of the situation. I have learned about the potential ways to manage and possibly delay memory loss, which has presented many “coulda, shoulda, woulda’s.” Controlling insulin levels and balancing, blood sugar levels, helping the patient focus, boost their energy, and cognition-enhancing medications all can prolong memory in dementia patients, offering hope in the face of this daunting illness. As the disease advanced, the cherished moments of playing go fish with my Grandpapa began to fade away. His memory loss was relentless, and it left me heartbroken and bewildered. Something that once held great meaning in our lives had become unimportant, and I found solace in tears, seeking to understand why this was happening to someone so amazing. In the midst of the turmoil, my Grandmama passed away, leaving my Grandpapa's health to further decline. As he entered the middle stages of dementia, he lost the ability to recognize us, his memories were reduced to blank pages. Despite the pain, I clung to the cherished memories we once shared, hoping to keep our bond alive. One day, as my family visited my Grandpapa during his middle stages, I noticed the profound changes in his appearance. Yet, amidst the fog of his memory, a fleeting moment of connection emerged. I initiated a game of go fish, and to my surprise, he smiled, teasing me with familiar words. Although the game was short-lived, I found solace in that fleeting moment, knowing that our shared history had not been entirely erased. Witnessing my Grandpapa's rapid deterioration sparked a fire within me to seek ways for patients to navigate dementia without losing cherished memories. My determination to make a difference in the lives of dementia patients grew stronger, propelling me toward a career in the medical profession. I am in my last year of pursuing a Bachelor of Science in Health Sciences at Howard University, driven by a deep desire to positively impact lives. Through my education, I aspired to become a compassionate and dedicated medical professional, supporting patients on their journey to better health and seeking innovative solutions for dementia. Having witnessed the devastating impact of dementia on my family, I dream of a future free from its relentless grasp. My goal is to contribute to medical advancements that empower individuals with dementia to maintain their memories and cognitive abilities, enhancing their quality of life. Throughout my journey with my Grandpapa's battle against dementia, I have been deeply touched by the profound impact it has had on my family and have learned a lot from this experience. Specifically, I have learned a lot about the progression of dementia as I’ve demonstrated throughout this essay with hopes of using this research in my career. This experience has been a profound lesson in empathy and compassion. As my Grandpapa's memory deteriorated, I learned the significance of understanding the emotions and struggles of individuals facing challenges. It became essential to offer him support and comfort, cherishing every moment we spent together, even as his memories slipped away. Above all, cherishing memories became a profound life lesson during my time with my Grandpapa. As he began to forget moments we once cherished together, I understood the importance of preserving and sharing stories about him, so that I could share them with my younger cousins who did not have the opportunity to know him. Those cherished memories became the bridge that connected us to the essence of who he was, and I vowed to honor his life and legacy by preserving those precious moments forever.