Here’s the opening sentence from an abstract of a recently published article in the medical journal Brain:
Dementia in Parkinson’s disease affects 50% of patients within 10 years of diagnosis but there is wide variation in severity and timing.
So that sounds rather scary.
Last month, the New Yorker ran an article titled “The Memory House” by Larissa MacFarquhar, which highlights some of the recent advancements in caring for people with severe dementia. It focuses on two issues: housing and lying. I’ll discuss each one separately.
Housing
State-of-the-art housing for people with severe dementia no longer looks like the drab and dreary hospital wards of old. Depending on the part of the world the patient grew up and lived in, the new residences strive to create the same look and feel of the towns that the residents remember from their childhood. MacFarquhar describes a facility in Chagrin Falls, Ohio (and no, the name is not a joke), where the “large central room of the memory-care unit was designed to look like an old-fashioned American town square. There was a small fountain, surrounded by plants and a low stone wall; there were a couple of lampposts, and benches, tables, and chairs set about. The carpet was mottled with darker and lighter shades of green, to resemble grass growing and bending in different directions.”
“Streets” lead out of this central town square, but they are lined with clapboard houses side-by-side, with front porches and front doors, each of which opens into one of the patient’s rooms. The ceiling of the central room is painted and lit to look like the sky, and at night the ceiling lights are turned off to simulate the real night. The porches in front of the “houses” have rockers so people can sit and watch the other patients walk by.
MacFarquhar writes that if you leave the facility and drive into the nearby town, you’ll see the same clapboard housing with front porches and rocking chairs.
In other parts of the world, facilities for people with dementia also recreate the kind of environment the patients lived in as children.
To wit:
There are versions of the Chagrin Valley streetscape in many countries around the world—in the Netherlands, Italy, Canada, Australia. Many homes have rooms that re-create, with period details and vintage artifacts, a past world that their residents remember from childhood: the Dutch countryside of the nineteen-forties; small-town California in the nineteen-fifties; East Germany under Communism. All these fantasies are conceived of as a means of soothing the misery, panic, and rage that sometimes accompany dementia: to convey to people in later stages of the disease the impression that life is still as it was once, with children to take care of, and holidays at the seashore, and familiar homes to return to.
MacFarquhar labels this as a “psychological placebo…a form of deception.” Which leads to the other topic she writes about: lying to the patient.
Lying
If a resident at many of these new facilities asks to go home, what do you do? Do you tell them the facility is their home? That could be upsetting and unnerving to someone with severe dementia. So the new facilities have installed fake bus stops, where the care giver and the patient can go, sit on a bench, and wait for a bus that never arrives, until the patient forgets why they’re there and the care giver can coax the patient back to the main area.
The trend that many of these facilities are following is to not contradict a patient (for example, if a 90-year-old woman asks where her mother is, you don’t reply that she’s been dead for years) but to play along with the patient and try to figure out where the patient’s mind is really at.
It’s called “compassionate deception,” and it gets tricky. You can’t ask any questions, because that might put the patient on guard, but you need to talk and try to figure out where the patient’s head is at; probably the patient is “living” in an earlier period of life.
From the article:
In order to keep a person safely inside their world, it was necessary to figure out the boundaries and contents of that world—who lived in it, what activities took place there, and in what era—so that there would be as little dissonance as possible when the person used information from that past world to interpret the present. If there was someone missing from the present, for instance—because that person had moved away, or died—it was necessary to arrive at an explanation for this absence that the person with dementia would accept. This had to be done by a careful process of trial and error. If, for example, the person asked often where their son was, it was necessary to find out, by experimenting with answers and watching their reactions, how old they believed their son to be at that moment. If they believed him to be a small child, then telling them truthfully that he was out of town at a medical conference, say, would cause bewilderment or suspicion; but if they believed their son to be a college student, telling them that he was playing in the garden would also be a mistake. Continuity was essential. Even a momentary glimpse of another reality that led patients to doubt their understanding of things could be horribly traumatic; all the more so because they would not remember exactly what they had been traumatized by, and so would be left only with a feeling that something was threatening and incomprehensible.
To manage patients in this way requires the skills of an improv comedy actor, and yes, now improv actors are training the staff at these memory care institutions.
Even though this article dives deeply into these newfangled care facilities, I found a lot that resonates with what I’ve read about care givers and Parkies, especially when the caregiver is a spouse. For example, here’s a long excerpt about a married couple, Jim and Sondra (bolding mine):
Jim Beitel was too upset to sit down for dinner. He had come to Chagrin Valley only a couple of days before; for the first forty-eight hours his wife, Sondra, had stayed with him all the time, both of them miserable. A little while earlier, Sondra had forced herself to leave. Jim was fifty-eight; he had been given a diagnosis of Alzheimer’s at fifty-three. Now he barely spoke. He was a big, athletic man, six feet two, two hundred and twenty-five pounds. He was wearing a Led Zeppelin T-shirt, a rope necklace, black surf shorts, flip-flops, and a pair of sunglasses on his head. He had short, bristly gray hair and a short gray beard. He paced continuously, up and down the corridors, in and out of the dining room, into doorways and out again. Every now and then, he stopped suddenly and threw his arms out wide in a gesture of utter bewilderment.
Later in the evening, Sondra came back. She was a tiny woman in her late forties, with short blond hair. She stood with Jim in the central room and demonstrated how to throw a rubber ball into a toy basketball hoop. Then she gave the ball to him. Jim looked up at the hoop as though he didn’t know what it was. He hugged the ball to his chest and began to cry.
Jim and Sondra had both worked as engineers in the Columbus, Ohio, office of a multibillion-dollar construction company. Jim oversaw big commercial projects—convention centers, hospitals, ballparks. They had met twenty years earlier, playing on a local soccer team. In 2009, Jim’s brother, to whom he was very close, died of kidney cancer in his early fifties, and Sondra thought that might have triggered something in Jim, because his symptoms started soon afterward.
The first thing she noticed was his reaction time: one day she said, while they were working on the computer together, “Close that window and open another,” and she noticed that it took him time to process what she had said. She then saw that in meetings he had begun asking people to repeat things and writing down what they said. Then one day he had an appointment with a doctor he’d been seeing for twenty-five years and he couldn’t remember how to get there. Because he was so young, nobody thought of dementia. Doctors tested him for inflammation and hepatitis and mad-cow disease and autoimmune diseases; they gave him spinal taps and put him on steroids. Finally, they ordered a pet scan of his brain and diagnosed Alzheimer’s.
Jim went on disability, and Sondra bought a trained English setter to keep him company while she was at the office. The dog brought Jim’s medication to him at the sound of an alarm. When Jim was still able to drive but grew disoriented in large parking lots, he could tell the dog, “Truck,” and the dog would find his truck. If he got lost walking in the neighborhood, the dog tracked him down. The dog enabled Sondra to keep working awhile longer. But after a year it took so much out of Jim just to manage simple tasks like finding his coffee cup that he was exhausted by the end of the day, and she stopped working so that they could spend time together while he was still aware of it. They decided to check off some items on their bucket list. They took money out of Jim’s retirement account and travelled to New Zealand and Italy and Hawaii.
Sondra decided that if Jim did something weird, or said something that wasn’t true, she wouldn’t correct him. If he put on four baseball caps at once, or put a flip-flop on one foot and a sneaker on the other, she would just go with it. Then again, he had always been a pretty obstinate person, so this wasn’t a big change in their relationship. “Everyone knew if Jim says the grass is blue it’s not worth trying to talk him out of it,” she said. “And that just rolled right into when he was sick.”
Eventually, things got to the point where Sondra couldn’t manage taking care of him alone anymore, so she began looking into nursing homes. Chagrin Valley was much nicer than other places she saw—no funeral-home carpeting, no grim hallways with wall protectors and handrails—but it cost about the same. She dreaded leaving him there, but she also hoped that finding someone else to help with daily tasks would allow them to be close again. “I spent so much time taking care of him that I had no time to be his wife anymore,” she said. “By the time where I can sit down on the couch and hold his hand, I’m so completely drained mentally and physically that I can’t even go through a photo album with him. I’m hoping now I can hold his hand and go for a walk and just have that husband-wife relationship. We still have it; it’s just that we haven’t been able to really experience it in a long time.” Many people said this: that while they were taking care of their wife or their father at home they were no longer a husband or a child—just a nurse.
How many times I have read similar stories about Parkinson’s disease and family caregivers?
The article doesn’t mention that some of the people with dementia were Parkinson’s patients, but it rarely describes a patient’s background and medical history. It does profoundly describe what the residents are like right now, and it seems that even though they are living under the same roof, each person’s mind is off in different world.
The questions that remain with me are:
- How many Parkies reach this level of mental decline?
- How can I myself know if I’m losing my mind?
- Are these realistic home-town facilities the norm everywhere, or are they new and few, with more being developed as the Baby Boomers start flooding such institutions?
- What can I do to forestall a descent into dementia?
- Am I already off my rocker in some ways?
