Expanding Access to Quality In-Home Care for Elders at CareYaya – with Carson Swain

Growing up, I have always had a close relationship with my mother and maternal grandfather. I can still remember staying with my grandfather at the gas house he worked at, my grandfather pushing me on the swing set in his backyard, my grandfather buying me cosmic brownies and not letting anyone else eat them because they were only for me, and countless other memories. However, the memory that I most recall now with my grandfather is him looking at me with teary eyes, asking “Who are you?” My grandfather understood that I was someone important to him, that there was some personal connection, but he could not put all the pieces together. This was his new reality after being diagnosed with Alzheimer’s Disease. In the late stages of Alzheimer’s Disease, my grandfather did not know those closest to him nor himself, losing his entire identity.

One’s identity journey is constantly evolving throughout life, and it is one of the most important self-journeys we are faced with. How we choose to identify reflects what we want the world to know about ourselves and how we want the world to see us. For a neurodegenerative disorder that impacts 1 in 3 elderly persons to completely strip one’s identity from them that they have spent decades curating is painful to watch. This is my motivator to better understand the mechanisms of memory and in turn what makes us who we are.

When I came into UNC, I joined the Batrakova lab, which studied nanomedicine and drug delivery systems to the brain for neurodegenerative diseases like Alzheimer’s and Parkinson’s. The lab focuses on using macrophages, one’s immune cells, to deliver drug therapy to the brain to reduce neuroinflammation and promote neuroprotection. Within this lab, I learned a lot about how hard it is to deliver forms of medicine to the brain because our body has its own protection system called the Blood Brain Barrier (BBB) that is very selective in what it lets through. I am grateful for this experience as I gained knowledge about novel drug delivery therapeutics. After my time in the Batrakova lab, I wanted to dive deeper into a different area of interest which involved how physicians communicate with patients with cognitive impairment due to Alzheimer’s Disease or Alzheimer’s Disease-related dementia and their respective caregivers.

Being a bystander in the progression of my grandfather’s disease and watching the impact it had on my mother shaped my academic trajectory. I watched my mom’s mental and physical exhaustion wear from trying to balance her normal day-to-day work life and trying to assist in my grandfather’s care. Doctors did not try to fully explain my grandfather’s condition to my mother, instead they told her that he had a form of dementia known as Alzheimer’s Disease and the symptoms he would most likely exhibit. Through this experience, I learned of a call to action in the healthcare field involving patient education and the caregiving system.

I joined a clinical research position at the UNC Aging Brain Clinic, working under Dr. Heidi Roth. In this position, I study how a visual tool may improve patient-provider communication for patients with cognitive impairment and their caregivers. Our goal is to improve a patient’s understanding of their diagnosis, along with educating the patient’s caregiver too, who is usually a family member or loved one. I have enjoyed talking with patients and getting to see how physicians go about explaining diagnoses in a clinical setting. Through this experience I have also learned that many families have a similar experience to mine, as a family member or loved one is having to provide informal caregiving to a patient with cognitive impairment.

This semester, I am working as a Karen M. Gil intern at CareYaya, a UNC-founded health technology startup that mobilizes pre-health college students as caregivers. CareYaya’s foundational purpose is to expand health equity and accessibility to care. The company created an online caregiver registry for families that makes the process of requesting care, managing a schedule, and getting matched to great college students simple. Through this service, the families pay the caregivers directly, which keeps the cost to families lower and the pay to the caregivers higher, compared to other home care options. The student caregivers can accept the care requests that fits most within their schedule, creating a flexible job for pre-health students to gain experience without interfering with their academic schedule.

When I first started as an intern at CareYaya, I was tasked with assisting in the multi-state expansion plan. I do not have a strong foundation in business, so I first read literature reviews on scaling up methods for healthcare initiatives. CareYaya had only been able to gain traction in the NC Triangle area through grassroot efforts of team members. The team at CareYaya was able to spread flyers to hospitals, clinics, community centers, college campuses, churches, and more throughout the Triangle area, which helped grow the platform. However, it is hard to do a similar approach in other states when the team cannot be physically there to replicate the process. In turn, we hired student campus ambassadors at schools in different states to spread the word. These student ambassadors know their college campus and local area better than anyone on the CareYaya team, helping spread the word of the caregiving platform. Through these efforts, the company has been able to start expanding into five other states, and hopefully will continue expanding.

Recently, the CareYaya team has begun thinking about a project to expand health literacy, which they have tasked me in helping lead. The project involves a student competition in which college students are to read research article of their choosing and then transcribe it into a plain language summary. We understand the scientific field is full of complex research reports that are hard for the average person to understand, so this opportunity allows research to be more consumable for a wider audience and developing college students’ scientific writing ability. Thus far, I have worked on a list of possible topics to give students some ideas on possible research articles and topics. Along with this, I have written a plain language summary for the clinical trial study for the new Alzheimer’s drug known as lecanemab, to be used as an example for participants.

What I have learned from my experiences is that there is always room for improvement. There is always room to improve on a small scale like oneself, and there is always room to improve on a large scale like a government system. The United States healthcare system, for example, has much to improve regarding access to care, expansion of coverage and services, improving overall health outcomes, and more. On my journey, I expect to take every experience as an opportunity to improve, whether it be on an intrapersonal scale within myself or on an infrastructural scale within a government system.