John Thorndike | The Last of His Mind |

Archive for June, 2010

Mistreatment of Alzheimer’s Patients

Wednesday, June 30th, 2010

Here’s a scary report. According to Alzheimer’s Daily News, “A recent study by UC Irvine’s Center of Excellence on Elder Abuse and Neglect examined mistreatment of elderly who have been diagnosed with Alzheimer’s or similar disorders. The study found that nearly half (47%) of the 129 participants in the study with Alzheimer’s had suffered some degree of mistreatment by their caregivers.”


Mistreatment is a broad category, so it’s possible. But Alzheimer’s Daily News goes on to report that “the researchers discovered that the best indicator of mistreatment was examination of the behavior of the dementia sufferer toward the caregiver. Mistreatment was most likely to have occurred when the elderly resident exhibited psychological and physical aggression toward the caregiver (i.e. pushing, shoving, and swearing at the caregiver).”

In other words, the study’s authors believe that it’s mistreatment by caregivers that gives rise to the obstreperous behavior of dementia patients.

I find this hard to believe. Everything I experienced with my father, and every caregiving story I’ve read, leads me to think it’s the luck of the draw as to which Alzheimer’s patients turn refractory. Cantankerous old women may turn docile, and formerly respectful men may lash out at the wives or children they no longer know. How the study’s authors tie mistreatment to pushing, shoving and swearing seems tenuous to me—especially since the report includes this clarification: “It is important to note that the study does not determine whether these behaviors preceded or followed the mistreatment.”

Hey, doesn’t that negate the whole concept of cause and effect? I’d say it’s back to the drawing board for this study and its authors. They might want to tighten down on their data collection as well, since “Most of the data was provided by the caregivers.”

All that said, I can easily see how “mistreatment” (such as confining a dementia patient to a nursing home, to their own homes, to schedules they feel uncomfortable with) could lead to the behaviors mentioned. It’s a miracle that Alzheimer’s patients don’t try to burn down the world. The frustration of the disease, the agony of forgetting language and people and all one’s past: it would be enough for me to go into a rage, I’m sure. Still, laying the blame of rowdy behavior by Alzheimer’s patients on their caregivers seems to come from a chilling and narrow perspective.

Here’s a free link to the study results. You can read the full study online, but you have to pay for it.

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Smacked by A Pair of Stories

Monday, June 21st, 2010

I’m healthy. I feel reasonably spry, and am about to head off on a canoe trip with an old friend, Deerfield Academy class of 1960, down a river in Nebraska. (We made the same trip last year and didn’t see another soul on the river for five days.)


But just last week I attended my fiftieth Deerfield Academy reunion, and was smacked by a pair of stories.

The first was the death of Tom Sieminski. I hadn’t seen Tom for fifty years, but none of us had forgotten his beauty and great good humor. In the fall he wrote in his report: “Right now I’m dealing with pancreatic cancer”—and well before the reunion he was dead. He joins eighteen other members of the class who have died, with 125 of us still kicking.

The second story was the distant look and shuffling gait of Doug N, a guy I had only known tangentially at Deerfield. Doug could now only speak in a whisper, and he had trouble completing almost any sentence, any thought. I was immediately drawn to him: to his struggle, and to his courage at coming to the reunion. He had a friend, perhaps an old lover—I heard different stories—a woman ten years his junior who had come with him, who gave him his medications, who looked for him when he got lost, who made the whole visit possible. “Doug has Parkinson’s,” she told me simply.

Talking with him was like talking with my father in the middle stages of his dementia. Doug struggled to put his ideas together. He often looked lost. He’s just my age, of course, which made it a shock to see him having such a hard time with language. Day by day, at home in New York, he may do better than at a crowded reunion with lots of noise and dozens of old acquaintances. But what I saw, or imagined, was someone who had things to say and stories to tell, but who could not get them out. I put my ear close to his mouth, trying to catch as much as I could (Parkinson’s patients sometimes lack the muscle control needed for loud speech), but then his words would give out altogether, and he could not explain what he was trying to say.

I’m drawn to dementia, I’m drawn to struggle, I’m drawn to loss. One hears plenty of successful stories at the 50th reunion of an eastern boarding school—but it’s the harder stories I want to know about. And with Parkinson’s, a lot is played out right on the surface.

But of course, I’m still so healthy.

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