Abstract

Abstract

Friday, August 24, 2018

First in the nation


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.

Friday, August 10, 2018

Sequential steps


On the first Sunday in February 2018, I was involved with a “dementia-friendly” training session. The venue was at my church, St. James’s, which serves both Cambridge and Somerville. A few of people who came had some form of dementia themselves. Immediately after my diagnosis in 2015, my minister, Holly Lyman Antolino, took an interest in my disease. Another key part was filled by Beth Soltzberg, who works at Jewish Families & Children’s Services in Waltham. We were among volunteers in overseeing a volunteers’ training session for people interested in being “Dementia Friends.”
What does this term mean? Volunteers are trained to detect dementia and take appropriate steps. In a ten-page packet that was passed out that February Sunday, the header on the left read “Normal Aging,” and on the right, “10 Early Signs and Symptoms.” Some are subtle. They include, “Confused about the day [of the week] but recalled it later.” On the other side of the ledger are such things as, “Difficulty completing familiar tasks at home, at work or at leisure.” Another warning is “Confusion with time or place.” This is a significant one. And, one cell down on the chart is “Trouble understanding visual images and spatial relationships.” People who have this trouble may want to be screened for postcortical atrophy [PSA], a form of dementia that affects visual processing.
The two most alarming signs are the last two on the list: “Withdrawal from work or social activities”; and, more ominous, “Changes in mood and personality.” I am no expert, but I would be alarmed if a loved one of mine were showing these signs.
Another exercise, called “Bookcase Story,” showed how certain skills and forms of memory are more durable than others: “Imagine that each of has a bookcase that we’ve been filling up throughout our lives. Each book represents our skills or memories.” A picture accompanying the exercise shows a bookcase that is missing most of the books in the upper shelves, but still has many books on the bottom two shelves. Emotions are much more durable than thoughts, and short-term thoughts often dart away like swallows—frustratingly for those of us who are living with dementia. The lower depths of the brain are where the emotions reside. This is the domain of emotions, which typically endure long after the higher levels of thinking have been banished.
In another part of the session, participants were asked to write out a step-by-step process for something you know how to do. I chose to list the steps I take to make a sockeye salmon sandwich. First, I found a can opener in one of our kitchen drawers. But I didn’t open the salmon immediately. That would have caught the attention of one of our two cats, Rusty. Our other cat is skittish, and only eats dry food, so we don’t have to worry about her getting in the way. But Rusty is eternally voracious, and aims to push the envelope. Only occasionally does Rusty get up on the wooden railing on our back porch and plop down on the flashing. But when he does, it’s unnerving. When we were renting in Somerville, we had a large cat, even bigger than Rusty, and that cat did fall off our deck. We were surprised that he wasn’t seriously injured. All he did when he got back into the house was to hiss at his sibling.
I have digressed. I had to make sure one of our two cats, Rusty, didn’t rush into our kitchen as soon I opened the can. And it was a hot day, so I wanted to eat on our deck. But I still wasn’t certain that Rusty wouldn’t escape onto our deck. A couple of months earlier, Rusty did escape. I understand that cats tend to have excellent balance, but Paula and I were acutely aware that he could break a bone or worse. We had to entice him with wet food to get close to him so we could snatch him.
But back to the kitchen, with the aim of constructing my salmon sandwich. First, I found a small stainless steel bowl, large enough for three servings. Then, I grabbed two slices of multigrain bread from a local bakery that I have been patronizing for more than fifteen years. I mixed the olive oil and the balsamic vinegar, along with chopped celery and onions, in the mixing bowl. I also sprinkled some fresh-ground black pepper, before mixing everything together. Finally, I opened the can of “Red” salmon, more familiar to me as “sockeye” salmon. Before I finally opened the can, I made sure that Rusty was sleeping. Fortunately, he was. Then I quickly mixed up the contents. And, fortunately, Rusty doesn’t like my home-made dressing. He’d rather have his meaty cat food.