I was cutting up old calendars scavenged from the Pittsburgh Center for Creative Reuse, layering fragments across time in a spontaneous but purposeful attempt to create something cohesive, when I realized how symbolic the act was. In many ways, this mirrored my lifelong process of connecting seemingly disparate elements, sometimes intentionally, sometimes serendipitously.
Since moving to Pittsburgh as a medical student in 2021, with an interest in neurology and geriatric medicine, I have encountered intentional connections forged through curiosity and unexpected ones that emerged in the spaces between.
Why here, why now? Allegheny County is the exact right place to pursue learning about the landscape of memory care, a central component of geriatric neurology. The county’s concentration of older adults, its health care presence and recent financial investments in dementia care are among my top answers to the question.
A tougher question that comes up when I tell people my interest in entering the field of dementia care is: Why do you want to do work that is so “sad?” Particularly, some have been perplexed at why somebody so young (with an interest that started in my teens, now persisting into my late 20s) wants to do this work. Is it that I’ve had firsthand experience? No, it was not through firsthand experience in dementia caregiving, but rather “multifactorial” as we commonly say in medicine.
Driven by a vision
As a teenager back in my hometown of Poughkeepsie, New York, my friends and I would have long conversations about the abstract, society and philosophy. It sounds nerdy, I know, but there was something very coming-of-age about it. Poughkeepsie isn’t that far away from Woodstock after all; maybe exchange of ideas and counterculture was embedded in the soil.
Through these conversations I found myself coming back to the same conclusion: I needed to understand the brain to answer my questions about society and self. As a teen reflecting on identity, the concept of memory piqued my interest. How does memory build a person? Or how about a society? Being a first generation born in the United States to a family of immigrants from the former Soviet Union, and also being of two diasporic cultural identities — Jewish and Armenian — the notion of collective memory and collective grief felt like a part of me by interest and blood.
As a college student in Providence, Rhode Island, I volunteered at a hospice, offering respite care services for caregivers. I left those shifts appreciating the warmth in people who do this line of work and also thinking an awful lot about what matters most in life. In geriatric medicine, this is one of the 5 M’s: Mind, Mobility, Medications, Multi-complexity and what Matters Most.
I love this field because I never lose a sense of what’s important. Yes, these experiences are heavy and talking about them can make a room go silent, but it is centering to be confronted with one of life’s most challenging topics: grief. Having experienced intense grief at a young age, I really felt for those in bereavement, and desperately wanted to let people know that they are not alone.
In geriatric medicine, this is one of the 5 M’s: Mind, Mobility, Medications, Multi-complexity and what Matters Most.
Bereavement groups were my catharsis, and inspired my love for community-based care. Dementia caregivers experience a complicated type of grief: anticipatory grief, which means they initially grieve the person they knew before dementia, and will later grieve again after mortality takes over. It’s like a drawn-out goodbye, in stages. The emotional burden is compounded by exhaustion, as well as unexpected twists, turns and complicated new emotions. The toll this has on people is profound, which is why I devoted a year during medical school to studying caregiver health.
By serving as a community educator and support group leader for the Alzheimer’s Association, I presented on and discussed with caregivers the behavioral and psychological symptoms of dementia, like apathy and agitation. Talking about these symptoms brings many with firsthand experience to tears, understandably. At times, the eccentricities of their care recipient turn into a situational comedy, so long as they are safe. The whole gamut of experiences exist in the world of caregiving.
People often asked: What is going on in my loved one’s brain? Understanding the biology of the brain can be an anchor when the result of it feels grave and overwhelming. Sometimes, resurfacing that a misfolded protein aggregation in the brain is what’s causing these distressing symptoms is cathartic, as it takes the weight away from the caregiver in remembering, “It’s not your fault.”
When it was time to pursue my M.D., I chose the University of Pittsburgh because I felt it had particularly special experiences to offer, both within the medical school and city at large.
Pennsylvania, and especially the Pittsburgh area, are central to this work.
- About 282,000 above the age of 65 in the state are living with Alzheimer’s disease, and about 465,000 Pennsylvania family caregivers bear the burden of the disease, equating to 822 million hours of unpaid care, according to the Alzheimer’s Association.
- Around 20% of the Allegheny County residents are aged 65 and older, the second highest concentration among large counties in the U.S. after Palm Beach County, Florida, according to estimates from the University of Pittsburgh’s Center for Social and Urban Research. Almost 12% of Allegheny County residents aged 65 and older are coping with Alzheimer’s disease, and even more are affected by dementia.
- Allegheny County is one of the select counties nationwide that received the Centers for Disease Control-based grant under the Building Our Largest Dementia [BOLD] Infrastructure for Alzheimer’s Act, with the majority of other grants given to states, rather than counties. Local foundations have also provided funding to improve education and quality of care for people with dementia and to support caregivers.
The stress of tending to a person with dementia often leads caregivers to pay for institutionalization, at a heavy cost. As Dr. Jason Karlawish states in his book, “The Problem of Alzheimer’s,” many Americans opt to “pay until you can’t pay anymore” for care, then Medicaid steps in, and caregivers suffer the consequences before and after the loved one passes away. This financial burden goes to the next generation. Underserved communities are hit the hardest with problems associated with dementia as it is; the intergenerational impact only makes it worse.
Piecing it all together
I was taught devotion by example by my Armenian grandmother, who uprooted her life in Tbilisi, Georgia, migrated to the United States at age 65 and raised me. She passed away when I was 20, prompting a long grief journey imbued with reflection on how much she added to my life and shaped who I am. That reflection became a driving force to work toward bigger goals that ensure our seniors are healthy and well-integrated, particularly in the face of healthcare barriers.
As I’ve gone through college studying neuroscience, with a focus on the aging brain and the systemic problems that improper aging and dementia health care can have on society, and now on track to become a neurologist, my vocational goals solidified. I wanted to one day start a community-focused integrative dementia clinic that would:
- Incorporate cross-cultural understandings of the brain and aging into memory care
- Bring together clinicians in neurology, psychiatry and palliative care, as well as caregiver social and bereavement support
- Address the issue of the higher burden of aging and caregiving borne by lower socioeconomic and medically underserved populations.
It was and is a lofty goal, to say the least, and historical attempts for such a model have not sustained themselves financially. But I think mentors appreciate the vision and drive.
Memory care remains my priority because of all it entails about life, identity and society. Dementia care feels like community care; staying engaged with one’s surroundings is a part of the treatment plan. And there is no denying that we will have a large generation of dementia caregivers that need support.
Through learning about dementia in research, clinical care and directly working with caregivers, the only constant was change. As I composed my random calendar cutouts of impressionist paintings and nature, they became a three-piece collage series, morphing into a reflection of the never empty, ever changing tides of dementia.
Dorothy Yam is a medical student at the University of Pittsburgh School of Medicine and can be reached at Yam.Dorothy@medstudent.pitt.edu.
