Excerpt – On the day she disappeared into Los Angeles, Paulikas was one of nearly five and a half million people in the U.S. with Alzheimer’s disease, the most common cause of dementia. (Today, that number is more than six million.) In becoming lost, she experienced one of the disease’s most common symptoms: the unravelling of the brain’s navigational systems. According to some estimates, more than sixty per cent of people with Alzheimer’s disease will wander away from home or a caregiver, or become lost when an abrupt bout of confusion propels them from an otherwise familiar setting. Such episodes can be distressing for caregivers, given that lost individuals with dementia can be particularly hard to find. Becoming lost also carries with it the ominous possibility of injury or death. And yet a person with Alzheimer’s can’t simply be locked in at home. The loss of dignity and quality of life would be intolerable, and, as many caregivers discover, people with dementia can quite suddenly outmaneuver even those safety measures adopted with their input and consent. Wandering lays bare a painful truth about life with dementia: risk and freedom are inextricably intertwined. [..]
Karen Duff, the director of the Dementia Research Institute at University College London, told me that an Alzheimer’s-afflicted brain wasn’t unlike a buggy G.P.S. device that, with increasing frequency, blanks out parts of the map. The mental location of an intended destination—Walmart, say, or a room in one’s home—suddenly disappears, along with the memory of its adjacent landmarks.
Wandering is a logical response to this illogical and unsettling experience. A person might walk to escape what suddenly feels like alien territory, perhaps in the hope of figuring out where they’ve been stranded. In the later stages of the disease, a short-circuiting hippocampus may abruptly swap an old memory into the time line: caregivers are often told to take note if a person starts talking urgently about having to get to work, pick up children, or fulfill some other obligation that was part of a long-ago daily routine. [..]
People who are lost often make poor and self-defeating decisions. Fear hijacks executive functioning; the brain floods with cortisol and adrenaline. The fight-or-flight instinct takes over, and a lost person keeps moving, sometimes at a run, despite the fact that rescue is more likely if she stays put. Mitchell walked straight down the corridor and through the double doors at its end, then pushed through an unlocked door directly in front of her. It happened to open into the bathroom—a dead end. Because she could not go any farther, she entered a stall and sat down on a closed toilet lid. After some time, her confusion abated, and she once again understood where she was. [..]
In 1992, Robert Koester, a specialist in lost-person behavior, published a research paper analyzing the stories of twenty-five missing persons with dementia. The project morphed into what is now the International Search & Rescue Incident Database—a collection of more than two hundred and fifty thousand case files describing missing persons of all kinds. According to Koester’s data, three-quarters of people with dementia who are lost long enough to be reported missing are found within a mile and a half of their original locations. On foot, they tend to travel in relatively straight lines, and they often continue travelling until they collapse from exhaustion, which in the majority of cases happens within an hour. Alternatively, they may plunge into a part of the landscape from which they can’t escape—a hedge, a ditch, a body of water—often with fatal results. In Koester’s database, ninety-five per cent of people who are found within twenty-four hours of going missing are still alive; after ninety-six hours, the figure falls to forty-six per cent. [..]
Lost people with dementia tend to have few possessions with them. They don’t discard clothes or supplies along the way, which searchers might be able to find. If they do encounter passersby, they rarely ask for help or disclose their plight—perhaps because they don’t recognize themselves as lost and in need of assistance, or because they are frightened by their surroundings or too ill to speak. For similar reasons, ninety-nine per cent do not respond to their name when called.
“I have a hypothesis,” Koester told me. “One of the first things we learn as humans is nonverbals. One of the last things to go in dementia is nonverbals. I’m sure you haven’t had this experience, but try shouting somebody’s name for four hours. In the first couple of minutes, you may be able to sound pretty friendly—you know, ‘Staaaanley! Stanley!’ ” he said in a singsong voice. “After a while it just gets, like, ‘Stanley!’ ” A person with dementia, responding to the nonverbal cues in a searcher’s voice, may be frightened by its strained, desperate tones.
A great deal of anti-wandering advice is offered to caregivers who are already stretched thin. Keep the environment calm and restful; have distractions ready; hide car keys, hats, coats, purses or other objects that might inspire departure; camouflage doors with removable curtains, or paint them to match the wall. And yet a 2019 study that reviewed various deterrent and distraction methods found no evidence that any of them reliably worked.
Wandering is most frequent in the middle stages of Alzheimer’s, when the disease has progressed far enough to disrupt an individual’s cognitive functions but not enough to impair their motor skills. Many patients report depression, restlessness, and anxiety during this time, both as a direct consequence of the changes in their brains and as an understandable response to the frustrations of navigating life without the aid of consistent memory. But there can be good days as well. Maintaining a regular routine that includes activities such as walks, visits with friends, or time outside in the garden can help counterbalance the disease’s inevitable oscillations. These same activities can also create opportunities for a person to slip away unnoticed. But it’s neither possible nor advisable to prevent every situation in which a person with dementia could go wandering.
Meredeth Rowe, a researcher at the University of South Florida who studies wandering and dementia, underscored the nuanced nature of the problem. “The vast majority of individuals with dementia who go missing are located and safely returned in a short window of time,” she said. Most people are found, she went on, “by family or community members who recognize the person and initiate the process of getting them back home.” It’s possible, therefore, to approach the problem of wandering not just by trying to prevent it but by preparing for its occurrence. Prisca Mendez Asaro, a former caregiver in Kansas City, Missouri, described taking her mother for a walk around the neighborhood; Mendez Asaro knocked at each door, introduced her mother and explained that she had dementia, and passed along her own phone number and address so that neighbors could contact her if they saw her mother alone and in distress. “Some people struggle with, ‘Do I really want the neighbors to know what’s going on with me?’ ” Mendez Asaro, who now works with the Alzheimer’s Association, said. “But I felt that the safety and security for her and me was more important than trying to hide it. The interesting thing is, as I was telling the neighbors—I mean, the stories of ‘Oh, my aunt has it’ or, you know, ‘My best friend’s mother has it.’ All of these stories started coming out.” Not long after their outing, Mendez Asaro found her mother trying to pry an anti-wandering safety alarm from the wall with a butter knife.
In a crowded city, contacting every neighbor in advance isn’t feasible; many city dwellers have learned to avert their eyes from solitary individuals who are agitated, dishevelled, or speaking to themselves. But, as the sheer number and the concentration of people living with Alzheimer’s disease grows, so will interactions between members of the public and people whose disease has put them in need of assistance while rendering them unable to articulate that need. The more broadly Alzheimer’s disease is understood, the more likely it is that those interactions will end safely.
[..] the psychologist Dasha Kiper suggests in her book, “Travelers to Unimaginable Lands,” is that the disease robs both patient and caregiver of the experience of a shared reality, and of the moral contract they followed before the illness intruded. Imposing the use of a tracking device over a patient’s objections can feel like a violation of autonomy. “But in dealing with this disease,” Kiper writes, “there is rarely a clear divide between right and wrong; there are only trade-offs.” I asked Rowe, the University of South Florida researcher, what tools she would want to employ for her own safety if she received a diagnosis of dementia. She said that she would opt for phone-based tracking devices, and an emergency service like OnStar for her car. “And then I would just ask people to let me have a missing incident,” she said. “I mean, you could go three hundred and sixty-five days where you got to take a walk every single day, right? And then maybe you got lost on the three hundred and sixty-sixth day. I don’t want to miss those walks.” [..]
There is no perfect solution for a problem as complicated as Alzheimer’s. The best response to an illness that bends sufferers’ perceptions of reality may be an approach that is similarly flexible, recognizing both the facts of the disease and the personhood of the patient living with it. “Dementia disorders and perhaps life itself are best approached not by trying to change minds or challenging another person’s reality, but by striving to understand a mind,” Kiper writes. “To see it in context, to reckon with its contradictions, and simply to let that mind know it is worth knowing.”
Full article, C Purtill, The New Yorker, 2023.5.23