I’m sitting in a class on dementia. The doctor is lecturing about the condition’s prevalence, prognosis, neuropathology, diagnostic criteria, risk factors, deterministic genes and pharmacologic treatment. On a slide entitled “Non-pharmacologic Management,” the doctor tells us that dementia often leads to wandering. Half of those who wander and are not found in 24 hours are found dead. To try to prevent patients from wandering far, some assisted living centers have installed fake bus stops. When their urge to roam strikes, they will end up on a fake bus bench, next to a fake bus sign on the retirement home lawn — a twisted “Waiting for Godot.” We in the audience let out a collective slough of whats? and reallies? We cannot believe such a peculiar solution has been tried and proven.
After class, I look up the history of these phantom bus stops. The first was installed on the front courtyard of the Benrath Senior Center in Dusseldorf, Germany. The mean age of patients at the Benrath Senior Center is 84. Many have dementia. The house staff catches most of the patients en route to their wandering locales, but, before the implementation of the fake bus stop, if the travelers were determined and could not be convinced to stay, the center’s only options were to lock them in their rooms or sedate them. Further, a few seniors had made it onto city buses. For example, in a fervent search for her long-dead mother, one patient had even made it back to her childhood home, only to find other people living in it.
We had learned in a previous lecture that short-term memory is the frailest of all memory types. The cerebral infiltrates of dementia dine first on the recent past, working backwards in time, leaving the younger self for last. After recent history has been consumed by memory loss, our brains choose to believe we have the homes, jobs and to-do lists from decades prior. Patients become stricken with an ostensible realization of who they are, and where they need to be, only to be confused when nurses stop them in the halls, and shake their heads no.
When escapees could not be found on the grounds, the center had to call the police. Phone calls with panicked family and manhunts ensued. Looking for a solution, the center began brainstorming, and eventually consulted a local care association, which suggested the fake bus stop. In a leap of faith in the unusual, the center persuaded the local transit authority to install an exact copy of a Dusseldorf city bus stop outside the center’s front door, complete with the city’s green and yellow bus stop sign, posted times, and a bench matching all the others in town. So convincing was the imitation that neighbors of the center started waiting at it for buses to arrive, until knowing nurses explained the get-up and shooed them away. The center staff waited to see if a patient would be so convinced.
A few days went by until a woman from the center insisted on seeing her young children. She was frantic and agitated and could not be convinced Benrath was her home and her children were grown. A nurse led her to the bus stop, and they sat down.
They listened to the birds, and felt the afternoon sun. They watched cars go by. Soon, the resident’s panic receded. She forgot why she was there in the first place. The nurse invited her inside for coffee and the two walked back to the center. To forget you are in the present leads you to the past; to forget the past, leads you back to the present. In a double negative of amnesia, forgetfulness is the cure for forgetfulness.
Is it unkind to offer a partial omission of the truth — that no bus picks up at this stop? Do we owe the patients a dose of the hard facts? Or it crueler to inflict a reality onto a patient that has a limited to no capacity to understand it? After reading how patients interact with the fake bus stop, the premise no longer felt Kafkaesque or deceitful to me — which it had felt somewhat when I first learned about it in class. Instead, the bus stop seems more like a welcoming twilight, where distinct realities can calmly and quietly ebb and flow. In the safe, liminal zone of the bus stop bench, patients can be any age and exist in any present, without staff forcing truth or medicine onto and into them. The director of the center says you cannot argue with these patients because they cannot rationally be convinced. “You have to deal with them in the reality in which they live,” he says.
The Benrath bus stop is used every few days, now, either by those residents who get away without anyone noticing at first, or by those that have been led there, like the bench’s first patient, to wait until the patient’s urge to leave goes missing itself. The director says that the bus stop has changed how the staff approaches all residents — the staff has become more amenable to their patients’ insistence, and consequently more readily make allowances for a patient’s perceived reality. For example, prior to the stop, a retired baker kept waking and wandering at his old baking start-time. The staff would find him night after night in the kitchen at 2 a.m., frustrated nothing was set up for the day’s bake, and each night, the staff would corral him back to his room. However, since the bus stop has been installed, the staff has decided to let him make a go of it, and now the patient is allowed to bake each morning.
The Benrath bus stop was so successful in managing patients with dementia that soon other senior centers in the city installed their own faux stops, and the idea spread across Germany, and soon, across Europe.
We learned in an earlier lecture on neurology that Alzheimer’s is the leading cause of dementia, and that there are few medical interventions available to treat dementia. Unfortunately, scientists are not sure what causes Alzheimer’s — they are just as confused as the patients are as to what is happening inside their brains. In fact, one cannot definitively diagnose Alzheimer’s until the brain has been dissected. There is no cure. The disease causes continuous, progressive, irreversible cerebral damage until you die, which is on average five to 10 years after the diagnosis. Alzheimer’s drugs help, but only somewhat. Doctors can mitigate the effects of dementia with donepezil or memantine, we learned in our pharmacology class, but they cannot prevent the disease’s crippling progression. Once off the drugs, patients perform just as poorly on memory tests as those who had never taken Alzheimer’s drugs at all.
Working with a problematic disease, an unknown etiology and medications that can mask the neural deterioration but cannot stop it, this thinking-out-of-the-box senior center designed a space — a treatment, really — that allowed their patients to explore their panic and pain, and let go of false realities. In all of its unlikeliness, their solution is stunning in its tragic-comedy, simplicity and genius. It does not fight the aging brain, but allows for it to be. It is non-invasive. There are no side effects, unless you count decreased mental anguish. It can be individualized. It is cost-effective. Lastly, it is practical and kind, all of which making the fake stop completely unlike most treatments for intractable diseases I have learned about in medical school so far.
Before moving on to the next slide, the lecturer mentioned that researchers think the wandering could also be a search for meaning. That is, not only are patients with dementia searching for their past, but they are trying to find a purpose they know has been lost, along with the health of their hippocampis and medial temporal lobes. What a testament to the aging human brain, that despite atrophy and invading debris, there perhaps remains a deep, underlying resolve to search for something more. I would like to believe that this hypothesis is true. In that way, I think octogenarians and scientists are cut from similar cloth — from confusion and non-understanding, springs a search for consequence.
Columnist
Icahn School of Medicine at Mount Sinai
Katie is a Class of 2016 student at the Icahn School of Medicine at Mount Sinai, in New York City.
Pleural Space
Pleural Space looks at the experiential curriculum of medical school, the many things that are taught and learned that aren’t listed in a syllabus.