Nearly 25 years ago, at the age of 10, I wrote a letter that changed my life.
The letter explained how I was just 8 years old when I learned my father, Cecil Dawson, was living with Alzheimer’s disease. It shared how my mother and I had little choice but to place my father in a memory care community when we were no longer able to safely care for him ourselves.
The letter also made clear the financial devastation his illness caused — how we lost nearly everything in our efforts to make sure he was safe and properly cared for.
Even as a child I realized I was unable to make my father well again, no matter how desperately I wanted that. But I also knew I needed to do something to help my father. I knew I needed to speak out. That’s why I began to write letters in the first place. Because as a naive 10-year-old, I thought that if people only knew, then they would care.
A Cry in the Wilderness About Alzheimer’s
Take a moment to imagine this unlikely scene. A young boy growing up in the woods of rural Oregon believes a handwritten letter to those with power and influence might actually help his father. If Twitter or any other social media platform had existed in the early 1990s, I would have tried those, too.
At first, my writing elicited little response. Every few weeks, a random letter might appear in our mailbox from a politician offering concern. I nearly gave up more times than I can count, especially after writing (no joke) hundreds of letters with limited results.
But when I wrote a letter to National Public Radio (NPR), and they invited me to read it on air, everything changed overnight.
Tale ‘Stuns Senators’
Soon I found myself traveling to Washington, D.C., to testify before a Congressional committee and a packed room of over 500 people. All were waiting to hear what I — the 10-year-old — had to say.
The following day I met President Bill Clinton and Vice President Al Gore, albeit accidentally, as well as countless other elected officials and luminaries. I even got to share my family’s story over lunch with the Secretary of Health and Human Services. I will never forget that Secretary Donna Shalala gave me her dessert as I was still obviously hungry.
This entire journey was an improbable feat for a child whose family was struggling to survive on Medicaid and Social Security. Newspapers and most of the major television networks in the country covered our story. “Oregon Boy Stuns Senators with Dad’s Tale” read one headline.
A Lasting Lesson
The things I sought most as a child advocate — a cure for Alzheimer’s disease and a more informed approach to care, one that does not end in the financial devastation of the family — have not yet come to pass. Yet the experience stays with me.
In watching my father live, fight and ultimately succumb to Alzheimer’s, my life was profoundly shaped in a way he never knew.
He never met my wife, Sarah, a tireless advocate who is deeply committed to supporting people living with Alzheimer’s and their caregivers. He never realized his disease would impact every decision we now make as a family. Nor did my father realize his disease would create the foundation on which my professional career is based: improving care for people like him.
Few of my cohort, the children of the 1980s and 1990s, have likely come to terms with what Alzheimer’s disease means for our generation. Who can blame them? Our culture continues to inaccurately portray Alzheimer’s disease as something that only affects “older” adults.
Crossing Generational Borders
While my father may have been significantly older than the typical parent, his disease devastated our family in a way that is in no way unique to any one age group. Without question, Alzheimer’s disease is an intergenerational issue. In fact, Alzheimer’s disease is the sixth leading cause of death in the United States. Some estimates place it as high as the third. But the intergenerational impact is far wider, including caregiving as well as the costs to families and our nation.
So let me be perfectly clear. Without a breakthrough, Millennials inherit one of the greatest public health crises of the 21st century.
As if Millennials needed yet another problem to worry about. Climate change, student loan debt, rising inequality and now the threat of nuclear war. These issues all matter, immensely. They inescapably frame the world in which we make our lives, build careers and raise our families. So, too, does Alzheimer’s disease — whether we realize it yet or not.
Twenty years have passed since I lost my father to Alzheimer’s disease. I miss him every day. But in truth, the legacy of his journey has only just become fully apparent to me in recent months.
Two more of my family members have developed this fatal disease — one living and one now passed on. It would be a lie to say I am not worried. I cannot help but think about what the future of my family — our family — will look like. The increasingly likely reality is that one day it could also be me.
But I refuse to lose my hope. That is why I continue to speak out. What has become a lifelong commitment to seeing this through began with a letter and a belief that my father and others like him deserve better. But now I also fight for a future where I can look my wife in the eye and say: Alzheimer’s will not be our story.
Barriers to an Alzheimer’s Cure
So what is standing in the way of that future? What is the barrier to — dare I say it — finding a cure?
In a word: stigma.
This stigma is partially rooted in the insidiousness of ageism. Read: Alzheimer’s and dementia are not a normal part of the aging process. But the stigma of Alzheimer’s disease is also deeply rooted in fear. A fear of decline, the loss of self and dependence on others that results. We fear how others would treat us if they learned we have Alzheimer’s.
The great advances in treating other diseases such as HIV and cancer only truly began to take shape once we broke through their stigma. So, too, will be the case with Alzheimer’s.
It is how care will improve for people currently living with the disease and how increased investments in research on a treatment and — dare I say it again — a cure will come about. The recent announcement by Bill Gates that he is donating $100 million of his personal funds to Alzheimer’s research is an excellent development that can help spur further support.
One of the best ways to help break through the stigma of Alzheimer’s is by sharing stories. I have believed this ever since I first picked up a note pad all those many years ago as a child.
One day, I know the story I tell will no longer be one of tragedy or loss, but one of triumph. The story I tell will be the one of how we beat Alzheimer’s disease.
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