Anyone suffering from an incurable disease understands the emotional pain that accompanies physical pain.
Emotional pain resulting from an incurable illness is difficult to explain to someone who is healthy. There are, of course, many causes of emotional pain other than knowing you are facing a terminal diagnosis: the death of a loved one, the loss of a pet, divorce, social rejection, or personal failure. While those traumatic situations feel insurmountable in the moment, we generally recover, adapt, and move forward.
Throughout history, people have shown empathy toward those suffering. As a child, I remember my parents taking food to a family grieving a loss or calling a friend whose pet had died. The list of things - large and small- that my parents did to express care to friends, neighbors, church members, and complete strangers was long. They were not unusually saintly; they were average people who believed in looking out for others. Growing up, it seemed to me that almost everyone acted that way.
In my adult life, I tried to mimic their concern. They taught me through action that helping others is standard behavior. Looking back, I sometimes gave too much of myself to causes and organizations at the expense of my own well-being. At the time, it felt like the only right path - and I have no regrets, unless the rent is due and Linda and I find ourselves a few dollars short.
Over the decades, however, I noticed a cultural shift.
Fifty years ago, I served as a volunteer emergency medical technician at our neighborhood fire department. Back then, more people wanted to volunteer than the department could accept. Today, volunteer departments across the country struggle to find help, mostly surviving on hybrid models of paid staff and a dwindling roster of volunteers. Twenty years ago, when I served as board chair for a homeless shelter in Durham, North Carolina, recruiting steady volunteers was already an uphill battle.
Today, as an Alzheimer’s patient, I do not experience the widespread civic empathy that was commonplace in my youth. Yet at the same time, my close friends, family, and even occasional strangers have shown me extraordinary, demonstrative warmth.
That contrast made me wonder: was my feeling of a broader decline real, or was it just nostalgia? Is empathy actually declining?
The research suggests a troubling, nuanced reality. Major studies indicate a measurable drop in our collective propensity for empathy alongside a steep rise in individualism - even as our capacity for compassion remains alive beneath the surface.
A landmark meta-analysis led by researcher Sara Konrath analyzed decades of data from American college students using the Interpersonal Reactivity Index. Her team documented a startling 40% decline in empathy between 1979 and 2009, with the sharpest plunge occurring after the year 2000. Subsequent research in 2017 examining 51 years of data across 78 countries confirmed that individualism has risen steadily worldwide. As societies place greater premium on personal branding, self-actualization, and independence, our collective attention naturally drifts away from community-first habits.
This cultural transition was captured perceptively by Isabella Ehring in a November 2024 article for UC Irvine’s New University. Tracking America’s path from post-war community solidarity to modern “hyper-individualism,” Ehring notes how civic duty gradually gave way to curated self-expression. By the time smartphones and social media took hold, the self became a product to market. In a culture driven by online identity and consumption, kindness easily turns transactional - relationships become guarded, and compassion is choked out by the exhausting demand to project perfection.
Writing for Scientific American, commentators have pointed to a similar “empathy deficit.” Facing relentless modern anxieties and isolated behind screens, people find fewer organic opportunities to give and receive care. It is not necessarily that human hearts have hardened, but that people are so preoccupied with their own day-to-day survival that they lack the emotional margin to look outward.
Yet research also offers hope. A 2014 study on the empathy deficit revealed that people who view empathy as a learnable skill - rather than a fixed personality trait - deliberately push themselves to listen to opposing views, cross social divides, and support those who are suffering. Empathy is not extinct; it is a muscle that has atrophied from disuse.
I believe I speak for millions living with incurable illnesses when I say that the emotional pain of a slow decline can be heavy. We need that empathetic muscle working again.
It would be easy for me to spend my remaining weeks, months, and years watching television, scrolling endlessly, and eating donuts. But my parents taught me the value of purposeful work and looking out for my neighbor. I want to spend my “long goodbye” as an author and an advocate for the Alzheimer’s community.
To help make that work possible while navigating the mounting financial realities of this illness, Linda and I have put together a Sustainability Plan. If my words have resonated with you, or if you believe in the importance of this advocacy, please consider supporting our journey through our Go Fund Me campaign. Every bit of assistance helps us become financially self-sufficient and frees me to focus on writing, connecting, and making an impact.
Kindness hasn’t vanished - I see it in the people who stand by me every day. But our world needs a conscious reminder to look up from our screens, reach out a hand, and remember how to care for one another again. Please join me, and let’s make that difference together.