The group of researchers spread out around the computer screen. They seemed to hope that they had finally found the answer to Alzheimer’s, a disease that affects the brain and robs someone of their personhood and their reality. But they hadn’t, and the clinical trial would go on for another year with healthcare professionals around the U.S. testing a new drug that one researcher said held the answer. But it didn’t.
They drew blood at the many clinical trial sites, psychological testing was administered and the families, dutifully and in hope, brought their affected loved ones week after week. The trial would go on with hundreds of supposedly healthy, but impaired, older adults agreeing to all of it. And yet there was one piece missing in the trials and no one noticed it. What was it?
We stood at a major medical center in the New England states and talked about the patients, the test results, and the findings. Among those peering at the data were several interns writing dissertations on the disease, each one looking for a scrap on which to pin their epic piece of professional accomplishment.
I had recently returned from a trip to the Mid-West as part of my travels to various centers and I had one question that bothered me. As a psychologist, they trained me to look at people, but not confine my questions to one person, but to look at the group. After visiting at least ten centers, something became apparent to me and I had to voice my concern.
“Where’s the data on the caregivers,” I asked the group. They looked at me as though I must be falling into Alzheimer’s grip, too. Data on caregivers? No one was collecting that.
We know people don’t live in vacuums, and yet here was a multi-million dollar grant, written over weeks, that concentrated solely on testing the patient in every regard but one, the social side. Sure, they had a scale for that. How did they prepare themselves for the day? Were they able to dress, close their buttons, and comb their hair? Could they recognize themselves in the mirror? How did they interact with others?
I remembered my interaction with a couple where the wife began crying. Her husband, a former editor of a well-known journal, was frequently in the basement, fashioning bayonets from kitchen knives. The reason? He said he’d have to defend them once “they” came. Who “they” were was never mentioned, but they were out there and they’d be coming.
She had to put a bracelet with his name and phone number on it around his wrist when he went out on his bicycle now because he often got lost. Driving was out of the question after several car accidents. But the bike didn’t prove a suitable solution, either. Now, he had to wait and prepare at home and couldn’t leave her alone because they were coming.
As I sat and listened to her and many other spouses over the months of my travels, I became convinced that the protocol had a flaw; nothing about the caregivers. We didn’t ask them if they were depressed or anxious, or how they got through this incredible journey into darkness. Most of the time, they sat quietly next to the patient. This was less to help our research than to encourage the patient to take part.
I recall the husband who tried to eat paperclips because he couldn’t decide what was food and what wasn’t. Often, he’d leave the couple’s seventeenth-floor apartment, and, once out the door, he didn’t know which apartment was theirs. He’d opened the only door he found and was then locked into the stairwell.
Another patient, a woman in her 70s, once she took her eyeglasses off, couldn’t figure out how to put them back on. She also had difficulty at dinnertime, trying to eat the flatware instead of the food.
Imagine the frustration, alarm, and depression any of this can cause someone when it happens daily. How can anyone tolerate it without some help for their mental health?
We have diagnosed slightly fewer than seven million people in the United States with Alzheimer’s. If each of them has one caregiver, the number of people who require help with this disorder will be doubled. And, if things progress, thanks to medical advances, the number may quadruple in the next decade or two. But who is looking at the disease’s effects on caregivers, who, like the primary patient, are suffering from, if not with, Alzheimer’s?
I saw the mental torment of the man who had to drive his wife for almost two hours from their home to the testing center. “She kept changing the radio dials all the way,” he said, almost sobbing. “I couldn’t get her to stop.”
Then there was the extremely patient aide who had to keep coaxing an elderly woman with a promise of ice cream and lunch at a local deli. “All she wants to do is go for ice cream,” she said. The patient was delightful and used humor to answer every question. It turned out to be a common defense against memory loss and the pain it caused so many people.
One man, who had been married for almost fifty years, was on the verge of tears as he told me how his wife screamed when he tried to get into bed with her. “She keeps saying she has a husband, and he’ll come and find him there.”
Another man said that his wife was sure that someone was trying to break into their million-dollar home, so they had security systems put in at least three times. She never felt safe, whatever system was installed. And she kept firing the staff because she was sure they were stealing. In fact, she couldn’t remember where she’d put her jewelry and accused them of stealing it.
I turned to the group that day and asked what was the reason no measures were being taken for caregivers. As I recall, I said, “It’s a great resource for a dissertation any of you want to write.” I think that caught more attention than the computer screen.
Of course, that was two decades ago and we’re still trying to figure out how to help the other Alzheimer’s patients, the caregivers. How has the spread of this scary disease through social contact hurt their physical and mental health?
We have two groups that need to be assessed and treated, but we often fail to notice the second one.
