Just over a year ago, I watched my mother die on FaceTime surrounded by 400 strangers. I was trying to get off a ferry in France when I got a message from my father in Philadelphia: My mom’s health had declined rapidly in the space of a few days and if I wanted to say goodbye, it would need to be now. I tried calling, but the only way to get through was on a video call using the WIFI in the ship’s lobby, with throngs of passengers trying to disembark.
As soon as the video came on, I knew I was witnessing my mother’s final moments. It was too loud for me to tell her anything — that I loved her; that I was grateful for everything she had done for me; that I was proud of all she had accomplished — and I convinced myself that it would be easier to speak if I could take a few minutes to get off the ship and call back from a quieter spot. By the time I was able to ring again, she was gone.
The awful truth is that I said goodbye to my mom a long time ago. She first showed the lasting signs of Alzheimer’s Disease more than a decade ago and her decline was steep but lengthy. Despite continuing to travel to remote areas of Africa and Asia as a volunteer health worker — a path she picked up after joining the Peace Corps in retirement with my dad — she knew something was wrong. Her memory and judgment started to fade rapidly just before the pandemic, and I took whatever opportunities I had to share my feelings with her. COVID-19 isolation took its toll and by the time we could spend time together, she no longer knew who I was.
My experience with Alzheimer’s is one shared by millions of people around the world. Right now, in the U.S. alone, six million people are afflicted with the disease or a related form of dementia. And that number is expected to explode over the next 25 years to 13 million cases with the long tail of aging Baby Boomers. The failure rate for new therapeutics has been remarkably high. The two approved drugs have significant downsides, but that could change as artificial intelligence and modified mRNA treatments demonstrate greater viability.
What else could help?
We must prioritize Alzheimer’s as a public health threat and focus greater resources on reducing many of the root causes that scientists now suspect are linked to increased likelihood of developing the disease.
For years, I was among the many people who believed that Alzheimer’s Disease was largely linked to genetics. If my mother had it, and my grandmother had it, then there was a good chance Alzheimer’s was in my future as well. But this is wrong. Only 1 percent of cases are inherited, and most are related to rare, early-onset forms of the disease.
Increasingly, scientists are finding stronger links with other health threats — hypertension, inactivity, diabetes — that could signal predisposition. Reducing these chronic health issues has been a white whale in public health — it’s notoriously difficult to encourage people to adopt healthier behavior.
The expected boom in Alzheimer’s Disease cases comes with a unique opportunity.
One of the most effective ways to change behavior is by providing people with a single person or patient with whom they can identify. It’s called the identifiable victim effect, and it works like this: humans frequently get overwhelmed by large numbers — the thousands of people who die in a war, or get infected with a virus, or suffer from malnutrition. Stories that include statistics and big numbers lose their punch because the scale overwhelms us. We are numb to the impact as it relates to our own lives.
But when we hear a story about one person who is similar to someone we know, or we experience a health episode ourselves, we are significantly more likely to change our behavior and to advocate to those around us to consider alternatives. This may be a possible opportunity for course correction against Alzheimer’s: As more people experience their loved ones battling the disease or are thrust into the role of caretaker, the awareness of a connection between chronic disease and Alzheimer’s prevention could usher in a dramatic shift in healthier behavior among younger generations.
Such a shift can’t come too soon.
The projected economic burden from Alzheimer’s Disease is already $321 billion and is expected to top a staggering $1 trillion by 2050. Family and volunteer caretakers already spend 18 billion hours of unpaid time helping relatives with Alzheimer’s Disease. As more people like me enter the sandwich generation of caring for young families and aging parents at the same time, it is fair to assume that we will see a decline in productivity and corresponding increases in mental health crises and the kind of stressful behavior that fuels the cycle of health issues later in life. Outside of the companies that stand to profit from the health challenges of an aging population directly, the looming economic burden of Alzheimer’s should be a clear signal that chronic disease prevention is everyone’s business.
Framing Alzheimer’s Disease as a public health imperative linked to chronic disease prevention could be the catalyst we need to encourage younger people to adopt healthier behavior while there’s still enough time.