Dementia and caring for invisible second patients

On April 13, I received a heartfelt message from a San Mateo Daily Journal reader, a now 89-year-old woman named Ginger Smith. She is a mother and retired speech language pathologist who entered the field in the 1990s for a rewarding career combining medicine, teaching, research and empathy. She worked alongside neurology professionals and physicians at Stanford and UCSF.

In her book, Dementia Denied, Smith details traumatizing events causing her to constantly be in fight or flight, a contributing factor to what came later. Our conversation detailed how she is currently healing through therapy while reflecting on intimate experiences over the last 12 years (specific to cognitive function) in an effort to support caregivers, call for more medical research and provide a sense of hope.

In 2004, Smith was diagnosed with suspected Alzheimer’s disease. To clarify, dementia is an umbrella term for decline in mental ability. Underneath, Alzheimer’s is the most common form of dementia, accounting for 60%-80% of cases caused by genetics, behaviors and habits.

From 2004-2019, Smith had a series of hospitalizations and multiple diagnoses, leading to hospice in 2020. She was given two weeks to live, became bedbound, was unable to eat or speak and most of her medications were discontinued. At this stage, she had been diagnosed with Lewy Body Dementia, caused by abnormal deposits of a protein in the brain, called “Lewy bodies.”

These deposits affect chemicals in the brain, resulting in daytime sleepiness, visual hallucinations, sleep disturbances and balance issues, aside from memory loss. In LBD, individuals usually do not recover, similar to any case of dementia at an advanced level.

In medicine, reaching an accurate diagnosis can sometimes take longer than expected, making self-advocacy primal to navigating complex health issues. To prevent medical error, hospital groups partake in Diagnostic Excellence initiatives, recommended by the Centers for Disease Control. Smith herself went through a range of diagnoses, showcasing the constant changes in her cognitive and physical abilities, making conditions harder to pinpoint.

Miraculously in 2021 Smith returned home and she had regained her strength to walk, talk and regain independence. In 2023, after neurocognitive testing, she showed no signs of dementia, quantified on the Montreal cognitive assessment (MoCA) as a perfect 30 score. After lived experiences with severe dementia, she later published her book in 2025 alongside an editor S.R Hatton.

Smith’s story reflects vulnerable perspectives of confusion, anger and an urge for advocacy. It offers a call to action for more medical research and a relatable, but “humorous” approach to speaking about dementia, empathizing with those affected.

Today, approximately 7 million people have Alzheimer’s disease and by 2060, this number is expected to double. Current research is showing that dementia is more than just a few misplaced proteins, redirecting researchers toward taking a deeper look at cellular metabolism (the sum of all chemical reactions within the cell) and mixed pathologies (when more than one neurological disease simultaneously damages the brain) like LWD.

This strategic shift caused the last decade to see a 35% increase in new drugs being tested on top of a spike in clinical trials targeting Alzheimer’s. As research in Alzheimer’s and dementia related conditions expand, lending support through resources and support groups are deeply valuable.

As caregivers, prioritizing self-care is not selfish. It can set you up for long-term wellness both physically and mentally, making the act of caretaking easier to manage. When communicating with a loved one who no longer recognizes you, remember it is not personal. In moments when someone with dementia wakes up from a bad dream, remember their ability to decipher reality versus a dream is no longer there. Instead of denying their visions and fears, console them.

Every day should have a similar tone to it. Those with dementia thrive with a daily routine. When abnormal emotions or behaviors arise, it could mean something is wrong and needs medical attention.

Navigating the mental decline for patients with dementia and their caretakers means having empathy first. Frustration, anger and sadness all have a place and while early stages of dementia can be treated, empathizing with those already affected is equally as important.

Thank you to Ginger Smith for sharing her story and resiliency. My inbox is open! Message me at giselle@smdailyjournal.com.

Giselle Espinoza is a longtime San Mateo resident with a bachelor’s degree in communications, working in health care administration. She brings a Gen Z perspective and slight coffee addiction.