A Lost Dementia Patient Finds Her Way Back Home

Editor’s note: This story is a first-hand experience treating a dementia patient. 

In my first two years of medical school, I spent one night a week volunteering with my classmates at a homeless shelter through JeffHOPE. This student-run organization operates clinics at four homeless shelters and one harm reduction site. With physician oversight, JeffHOPE connects patients to the healthcare system and addresses their acute medical needs.

One night a patient walked in who was unable to tell us her name or how she got to the shelter. We quickly realized that the woman wasn’t able to tell us much of anything about herself. According to information provided by the shelter staff, she was likely in her 70s, had arrived alone and had been staying at the shelter for the past three nights. After a volunteer took her vitals and noted that they were elevated, a light flashed in her mind. She recalled that she had been diagnosed with high blood pressure and later recalled that she had dementia. Our patient was homeless, memory impaired and potentially, lost.

As a medical student, I aspire to specialize in treating memory disorders. And now, my classmates and I were seeing the real-world impact of this disease up close and personal. Our entire volunteer cohort scrambled to figure how to handle this new, unfamiliar situation. Whether she was lost or experiencing some medical emergency, we realized that she was not safe in her current state. I called local organizations I thought could give her some level of support, but they all punted, understandably, to other groups better equipped to help her. But none of them were. Unfortunately, the staff at the shelter lacked the resources to provide the wrap-around attention and care she would need. They needed to support the hundreds of other people they house and feed every week.

With no documentation, no wallet and no memory of where she had come from, we knew she wouldn’t stand a chance at getting placed into an assisted living facility or anything similar.

We felt stuck, and in every direction we turned, we faced barriers—with no clear path forward. What we did have was persistence and empathy for what we can only imagine was a very frightening situation for this patient.

Bit by bit, she let us into her world, and we got to know her. First a name, then as we built trust, she shared something much more important: that she was scared. It became clear that there was no safety net underneath her. While we could and would continue to try to find someone in the existing system to support her, we recoganized that in just a few key hours, we had become her advocates—and her path to safety.

My classmates who volunteer at the shelter with me put aside studying musculoskeletal anatomy and worked around the clock with this patient. We accompanied her to the local emergency department, the Social Security Office, the DMV—anywhere we could think of to get more information about her. At the hospital, we were able to track down her past medical history and confirmed that her state of confusion was not some new emergency; she was cognitively impaired. Critically, we were also able to obtain access to the address the hospital had listed for her.

Along the way, we recruited more classmates who were well-versed in the social services system to join the cause, and before long, we had multiple group texts and teams trying to piece together different bits of her life. After two days, we still had only limited but essential information: her name, address and Social Security number. We went to the police department near the address listed in her medical records and asked if they had any reports of a missing person. Even though they had not, they provided us with a different phone number that was linked to the known address we had. Through our online and in-person investigation, we determined she might have a sister and that this new phone number might be hers.

As a team, we were proud, but as medical students navigating a complex medical system, we all faced the reality of what failure could have meant to us, our patient and her family.

I dialed the number and explained why I was calling. I heard the voice of a woman—her sister—call out to the room around her with joy, I heard children—her grandchildren—shouting her name. That was her sister, she cried, and they had been looking for her for four days! They thought the worst had happened.

My phone was overflowing with texts from classmates who had put their lives on pause for several days to help this patient. They never gave up, and our persistence paid off. When her sister came to pick her up, we acknowledged how close all of us had come to failing this person. The patient, now in the close embrace of her family, was finally at ease. She couldn’t know who we were, but she kept saying how impressed she was with us.

In the end, we celebrated that in the face of near-insurmountable barriers—complicated by homelessness and dementia—we delivered our patient safely to her family for the care she needed.

I don’t want to be a dementia doctor because I think I can cure my patients or because there will be some miraculous breakthrough treatment that will revolutionize care for those suffering from this debilitating illness. One thing I have learned in my brief time in medical school is that honest-to-god cures can be few and far between. For complex cognitive disorders like Alzheimer’s disease, the concept of cures gives way to language laden with biomarkers, slowing trajectories of decline, lengthening clinical stages and expanding the time a person has to live with the disease.  

Many of the best places for dementia care offer visits with multiple doctors, blood tests and MRI scans, hours of cognitive testing and prescription drugs with wavering promises for improvement. And, with all that is currently being done, a specialist may still have difficulty answering seemingly simple questions like, “Is this Alzheimer’s or something else?” “What is this medication for?” and “How much longer will he be like this? How much longer until he gets worse?”

While dementia is among the most common neurological disorders, few neurologists get extensive training in diagnosing and caring for patients with dementia. National plans provide tenuous optimism for step-wise improvements. More recently, leading theories of Alzheimer’s disease pathophysiology have been questioned—with many drug trials failing to provide enough evidence of their effectiveness.

With a muddled past and present for dementia care, what does the future of this disease look like? More importantly, are we falling short in defining what "living well" with dementia actually looks like—for the patient and the caregiver.

The approach to dementia care should continue to model itself after leading institutions where patients have access to clinical trials, family-wide interventions, classes for caregivers, exercise regimens for patients and creative approaches to aging and dementia. They should continue to defy the conventional expectation of what medicine looks like. The complications of dementia do not usually put grandparents into homeless shelters where the best possible medical intervention is a family reunion. However, organizations that are multi-modal with experts in different aspects of dementia care can be better prepared to handle both the typical problems and the unexpected.

When I think about what kind of doctor I will be, I think about my patient at the shelter. I imagine her sister and all of the families looking after loved ones with dementia who can imagine all too easily, how nightmares can become waking realities. And I can also imagine a future of failed studies, missed opportunities, broken systems and medical unknowns that will force me to stumble and deal painful blows to my future patients. But there will be moments of rare joy, where pushing back on this dreaded disease yields a little bit of ground. There will be times when the larger narrative peeks out beyond the moment-to-moment pitfalls … and there will be hope.

In addition to his work with JeffHOPE, third-year medical student David Ney served on the executive board of Jefferson’s NODA (No One Dies Alone) Program. He and other Jefferson volunteers spend time and offer their support and compassion to terminally ill patients in their final days.