I am a newspaper-trained journalist with more than two decades of experience covering medicine, health, fitness and nutrition. My Dad hovers between the here and the hereafter in a body gripped by frontotemporal dementia.
He was always very proud of my work as a journalist. And I enjoyed, when he came to visit, that he could open The (Syracuse) Post-Standard and and read articles written by his daughter. But those stories weren’t about me, or him. They did not publicize our family. This blog sort of does.
It’s too late to ask my Dad how he feels about, well, pretty much anything. So I have to imagine what his response would be, based on the 45 years I’ve known him. Would he be proud of my work? Or embarrassed of the content and its occasional reference to him? Would he feel shame?
My father never sought publicity, but he was willing to promote certain causes. This one–raising awareness about Alzheimer’s disease and other dementias–is a gravely important cause. Our doctors and hospitals, our lawmakers, our employers, our neighbors, our whole society is simply unprepared for the approaching tsunami that is the Baby Boomer generation turning 65. Where 5.1 million Americans have Alzheimer’s in 2010, some 13.5 million will in 2050. The costs of treating the disease, $172 million today, will pass $1 trillion in 2050. As for research funding, money for Alzheimer’s disease is far below that for cancer and heart disease.
We don’t know what causes Alzheimer’s or other dementias. We can’t really confirm that someone has the disease until they die and their brain is autopsied. We know that people are more likely to develop Alzheimer’s as they age, but we can’t explain exactly why that is. We have no effective treatment. Doctors prescribe medications that they know will only work against symptoms, if they work at all, for a brief period of time. Many prevention theories abound, but there’s no consensus on what actually works. Alzheimer’s and other dementias remain, simply, a mystery.
My Dad would be fascinated with the disease. He was a lover of science. When he watched TV, it was often a documentary or educational program. I remember him telling me about an extraordinary research project that began in 1986. Catholic nuns at Notre Dame had agreed to be studied and tested by researchers from the University of Kentucky. Upon death, all 678 of the sisters agreed that their brains would be analyzed and stored in a laboratory. All of this was in an effort to provide some Alzheimer’s answers.
So I’m thinking that if he were in his right mind, my Dad would relish learning about frontotemporal dementia. And perhaps even be proud to read a blog on the subject, written by his daughter.
Read more about me on my “blogume,” AmberSmith, Ink.