Last May I attended a well-organized session in the Boston area about the national “Dementia Friendly” movement. Lunch was devoted to networking, not just socializing. Presentations were informative, and not overlong. A theme of the forum was an analogy to the 1990 Americans With Disabilities Act, which focused on making it much easier for people with handicaps to get around. I ended up titling my post “The curb cut for cognitive impairment,” a phrase I heard at the forum.
Last week, advocates for Alzheimer’s services, several of them employed by the Boston-area Jewish Family & Children’s Services organization, got some welcome news. Massachusetts will be receiving money for Dementia Friendly funding purposes. As JF&CS’ Beth Soltzberg commented in an email, Dementia Friendly is an international organization that aims to change the way the public perceives people with dementia. Soltzberg also noted that the organization will be training volunteers in various locales, including nonprofits and churches and other houses of worship.
And why are such services necessary? Even in an early stage of Alzheimer’s, routine tasks can become challenging. In 2013 and 2014, before I was diagnosed but knew something was wrong, I was doing the vast majority of my family’s grocery shopping. In one ignominious stretch, I lost my shopping list at my very small, very crowded, Market Basket supermarket in successive Saturdays. On the first visit, I finally recovered the precious list, amid muddy footprints. The next week I had to phone Paula, who texted me as many of the items on her list that she and I—mostly she—could recall.
But at least supermarkets are part of the old economy, not the new economy, where it seems that everything is expected to be accomplished in a blink of the eye. I have some nostalgia for the technology of the previous century, when someone sat for hours on a stool while people dropped tokens into slots that provided ingress to the subway system. I’m sure that those 1990s token takers must have been numbingly bored, but there was no real complexity for people with mild dementia to navigate the system.
This past Saturday I hesitated, and instead of adding credit to my plastic “Charlie Card,” I listened to an automated message informing me that I was out of time. I took it personally. Can’t you give me another 30 seconds. With some other person approaching the touch screen, I became uneasy. How long would it be before my fellow patron would become impatient with me? I chose the expedient route. I bought $10 of credit from the machine, which, in reply, spit out a small paper card. A single subway fare was $2.75. If I had used my Charlie Card, which still had ample credit on it, I would have received full value for my money. But by entering $10, a nice, simple sum, I was entitled to only three rides. I should have done the math in my head: $2.75 x 4 = $11.00. It was as if I was making an unintentional donation to the subway system. I suspect that this was by design.
But let’s move on to a more pleasant topic. This week, Alice Bonner, the Massachusetts secretary of Elder Affairs, appeared in a public service video, focusing on dementia-friendly services. Bonner’s mother, who has Alzheimer’s, has been a dancer since she was three years old. Now 87, she still loves to tap-dance. “When she’s up on the stage,” Bonner commented, “she communicates without words; and this can happen anywhere—when we’re in town and she’s going to the grocery store or a bank,” Bonner said. Bonner’s mother does get frustrated at times, Bonner noted, but when people provide her some patience, she can make herself understood. “It can be really frustrating, but if people can give her an opportunity,” by the end of the conversation, they have a sense of what she is trying to say.