Jane and Henry went to the memory center for a diagnostic workup because Jane had been having increasing problems with her memory. She underwent a battery of neuropsychological tests, and a week later they returned to meet with the diagnostic team and get the results.
Jane did poorly on the tests of memory, language, attention and calculation. The pattern of her deficits, combined with scan results, led the team to conclude she had Alzheimer’s disease.
That evening, after they got home, Henry sat down to read the report evaluating his wife’s cognitive decline. Reading it, Henry felt as though Jane’s mind had been parsed, every function examined. And mostly she had come up short, sometimes badly so. It seemed so thorough, Henry wondered if there was room for any hope at all.
Neuropsychological tests are useful and thorough. But for all that these tests investigate and reveal, they have two major limitations.
First, they don’t necessarily reflect what the person can do in real life.
I think of my anxious 73-year-old mother, sitting in an unfamiliar room in a hospital with a stranger, however kind and helpful. She is asked to name the thing in the picture. She knows what it is. She’s even been to Egypt and ridden a camel right up to one. But she can’t come up with the word “pyramid.” The best she can do is “a thing in the desert.”
But what she can do there, at the hospital, might not be what she could do if she and I were sitting comfortably at home together, looking at the picture album of her trip to Egypt in 1937. The black and white photos include the camels with their presumably colorful saddle blankets, the Sphinx, two pyramids and the camel guides in their turbans and long, loose tunics. And atop one of the camels is my mother, then just 22, in a jaunty hat with a feather in it.
In other words, the photos are rich in context, which the picture she was shown during the testing was not. Resonant contexts like that, or ordinary ones like a social environment with familiar people doing familiar activities, provide myriad useful clues and use many cognitive functions simultaneously, which often improves performance. In contrast, questions designed on purpose to test for an isolated cognitive function are devoid of accompanying details.
The second limitation of neuropsychological tests is they don’t look for—and therefore miss—other strengths, the very ones that can remain intact in dementia. If we overlook those abilities, we won’t credit the person tested with all that she (or he) can still do.
Here are some of those retained strengths as they played out in real situations.
The ability to adapt and solve problems
This story comes from Steven Sabat’s book, The Experience of Alzheimer’s Disease: Life Through a Tangled Veil.
Mr. R. attended a day program for people with dementia. One day, he was seen at the coat rack. He went from coat to coat, methodically taking out the contents of the pockets, looking at them, putting the contents back, and then on to the next coat.
“As he moved from one coat to another,” Sabat writes, “he reached into the pockets of a particular coat and looked at the contents. As with the other coats, he put the contents back, but then he took this particular coat off the hanger and put it on, for it was his coat.”
Mr. R. could not recognize his coat by sight alone, so he devised “an adaptation that allowed him to take advantage of an intact ability—he could recognize his own property in the pocket, and when he saw his ‘stuff,’ he knew that it was his coat.”
As Sabat points out, the logic of his adaptation would have been missed completely if he had been stopped in the middle of what someone else judged inappropriate behavior. Fortunately, that didn’t happen.
The ability to feel pride or, conversely, humiliation
Mr. R. also demonstrates a second ability remaining in someone with dementia. Motivated to preserve his self-esteem, he came up with a way to identify his own coat.
The ability to use logic and reason
I hope the story of Mr. R. puts to rest the fallacy that people with dementia can’t use logic. If we try, we can detect logic in their actions and other communications far into the disease. It is mainly when the person with dementia has lost touch with the facts that his logic can lead to a different conclusion from ours.
If we pay attention, we can see reasoning even in some bizarre occurrences.
We in her support group knew that Cindy was worried about her husband, Dan’s, driving. He refused to give it up, so she made sure she went with him whenever he drove.
One day he headed onto a notoriously narrow bridge over the Delaware River at Washington’s Crossing, PA. Cindy held her breath as he edged closer to the side of the bridge.
Finally, she spoke up. “Honey, I think you’re getting a little close on this side.”
There was a brief silence, then Dan said, “You take care of that. I’m driving.”
Caregiver stories like this make for some welcome and tension-breaking laughter in a support group. But let’s examine what happened, because there is some sense to it.
Most people with dementia have problems focusing their attention, resisting distractions or shifting their attention when necessary. It may have been that Dan couldn’t connect with “You’re getting a little close on this side” because he was concentrating on the road ahead of him and couldn’t shift his focus. Therefore, anything else remained an abstraction. As a result, he could reason that, because he was busy driving, it was Cindy who should take care of whatever it was.
The ability to empathize with and comfort others
Muriel lives in an assisted living home devoted to dementia care. She can no longer bathe or dress herself, and she rarely speaks. But she’s still alert. Whenever she sees or hears someone in distress, she goes to the person, takes his hand and sings softly to him. Her kindness never fails to bring comfort.
Muriel’s daughter says her mother had a magic charm when it came to calming babies and singing them to sleep. Clearly, she still has that charm.
The ability to find purpose
In addition, by comforting others, Muriel has kept purpose in her life.
Mr. R.’s pride and Muriel’s empathy illustrate the strength that, when nurtured, can be retained to the end by those living with dementia.
The capacity to experience emotion
The weeks after his wife’s diagnosis were rough for both Henry and Jane. He was sad and she was angry, states in which neither could be much help to the other. Furthermore, Henry was worried that Jane’s anger was a symptom of Alzheimer’s and would remain throughout the course of the disease.
Finally, Henry called Vicky, the social worker they had met with at the memory center. He asked her if anger was a typical Alzheimer’s symptom.
“No,” she said, “but it is a typical reaction to loss. I know I’d be angry at my fate if I were diagnosed with Alzheimer’s. Maybe we should think of Jane as having a normal reaction.”
Vicky explained that sometimes people’s reactions are heightened with Alzheimer’s because they become less inhibited. But their emotions are on the mark—that is, on the mark as long as we judge the situation from their perspective.
The social worker suggested that Henry let Jane know he understood what she was feeling and then create opportunities for her to experience more positive emotions, so she could see that life with Alzheimer’s still held pleasures.
They began to take daily walks in the woods near their house. Henry found a YouTube video of an old favorite, Abbott and Costello’s Who’s on First, which made them both laugh as hard as ever. And Henry did something he had vowed he never would—he welcomed a kitten into their lives.
The couple had plenty of hurdles ahead of them, but thinking of Jane as a person with normal feelings helped Henry turn his focus away from her cognitive losses and toward an appreciation of how much of his beloved Jane was still there.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
