A sea change in attitudes?

On Wednesday evening, I took part in a forum on Alzheimer’s at the Somerville Library. The forum grew out of a grant I received from the Somerville Arts Council in connection with this blog, and as the event was approaching, I was obsessing about getting a respectable turnout. What would I deem “respectable”? Perhaps twenty. Once, more than a decade ago, when I was promoting a book of mine, I did a reading in front of a quite exclusive group: one acquaintance of mine, along with one of the librarians and an elderly woman who appeared to be far along the dementia spectrum. This was at the end of a number of readings I’d done, including well-attended sessions in Chicago and Brattleboro, Vermont. But the lesson from more than a decade ago was fresh in my mind: If you want people to come, you’ve got to reach out to as many people as possible. With the help of Paula, librarian Cathy Piantigini, and a fellow panelist, we were able to pack the main library’s lecture room.

One of the panelists was Senator Pat Jehlen, the longtime chair of the state’s Joint Committee on Elder Affairs. Another was John Zeisel, who has described his mission as connecting with people with late-stage dementia “through abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch.”

I was one of two panelists to speak directly to the experience of having Alzheimer’s or a similar disease. I highlighted the importance of recognizing that while Alzheimer’s lacks a cure, those of us who are still in the early stage of the disease can expect to live, on average, ten to fifteen more years after their initial symptoms—far longer than people with most incurable diseases. A fellow panelist spoke fluently about dealing with Posterior Cortical Atrophy, a variant of Alzheimer’s that affects vision.

I wasn’t taking notes during all of Zeisel’s excellent presentation, but the takeaway for me was this: People like me and my fellow panelist represent a sea change in attitudes toward dementia. While not everyone with Alzheimer’s wants to disclose their diagnosis publicly—particularly if they are still employed—coming out is now more acceptable than it has ever been. It wasn’t until the famous World War II-era actress Rita Hayworth divulged that she had the disease in the 1980s that Alzheimer’s emerged into the public consciousness. And there is still a ways to go.

Last September I wrote about the book and movie about Alzheimer’s, Still Alice. First I read the book, which was informative, but in one key aspect hugely misleading. Nowhere did the author, Lisa Genova, make clear that the main character had a particularly fast-moving variant of the disease. As I noted during the forum, Still Alice depicts a fictional character who within a mere two years is reduced to a state of utter helplessness. Novelists and filmmakers are under no obligation to treat medical conditions accurately or fairly, of course. But I can’t help thinking of some anonymous person with mild cognitive decline being totally freaked out by the possibility of being reduced to an almost infantile state within a mere two years—and therefore being too afraid to be screened.

This is not the way to encourage people to confront a disease that is a good deal less horrifying than most people assume.