During my
ten-plus years working at the Massachusetts Municipal Association as an editor,
writer and project manager, I didn’t recall seeing any articles about
Alzheimer’s in either the Boston Globe
or State House News. And at a time
when I was showing early signs of dementia myself, the last thing I wanted to
do was to talk about or think about dementia. But in the years that have
followed, the Globe through its
partnership with STAT, reporting on health and medicine, has shed much light on
Alzheimer’s and other forms of dementia.
A new law, championed by the Alzheimer’s Association in
Massachusetts, will require doctors, nurses and other health-care workers to be
trained to spot patients with dementia. In a recent Globe article on the law, Alfredo Bartolozzi, a former cohort of
mine in a support group at the Alzheimer’s Association in Waltham, was mentioned
at the start of the article, because he was at a stage of the disease when
presumably simple tasks can be highly challenging. His wife, Rhiana Kohl,
pointed out that during Alfredo’s recent hospital stay, an X-ray technician
didn’t understand that Alfredo was no longer equipped to understand and answer a
series of questions.
Alfredo was diagnosed as a very young age, in his
mid-forties. By comparison, I was diagnosed at age 53, which is more typical of
young-onset Alzheimer’s. As the Globe
writer of the article, Felice J. Freyer, noted, it typically takes a year or
two to tease out a diagnosis.
It was at in these years leading up to his diagnosis when
things became much worse for Alfredo and his family. According to Freyer, the family’s
finances were in a ruinous state. Alfredo was the person who handled their
finances. But he was no longer capable of managing that responsibility.
As Freyer noted, “With an earlier diagnosis, Kohl could
have taken over managing finances before trouble struck, and made other
preparations.” Alfredo would have been in a much better state, and might have
had some quality time with his family, or even make a trip to Italy. “And it
might have eased the ordeal for their two daughters, now both in their teens.”
Before signing the law, Governor Charlie Baker talked about
losing his own mother to Alzheimer’s. He was by far not alone. Many other legislators
at the law-signing ceremony at the Alzheimer’s Association office in Waltham
spoke about losing loved ones to the disease.
The gist of the new law is to mandate training of
health-care workers by October 2021—roughly three years from now. State Senator
Barbara L’Italien has emerged as a particularly strong voice on this law and
other dementia-friendly policies. And by the time that the governor was
wrapping things up, I was able get his attention for about 30 seconds.
My
message was that three years ago, when I was diagnosed, I could still speak
fluidly in any context. Now it’s much more challenging, especially in a public
setting, because I often lose my train of thought. The governor listened patiently.
A few minutes later he exited. But the law he signed will likely be on the
books for a very long time.