Wandering and Alzheimer's: Something Wicked This Way Comes

Wandering is complicated.

For example, Milo was staying at a Brookdale Assisted Care facility, Horizon Bay, in Chandler Arizona. He'd been diagnosed with vascular dementia. One day, Milo, who often went for short walks in the neighborhood of the facility, crossed the street where the Chandler Regional Hospital was, went into the emergency care wing, and asked to see a doctor about his memory problems.

Instead of treating Milo, or instead of walking him home (across the street), the hospital called the Brookdale corporate offices in Minnesota and lodged a complaint that Brookdale was not properly looking after its residents.

Brookdale's corporate office called Horizon Bay and ordered that Milo be evicted the next day, because he was seen as a wandering risk.

So, Wandering is quite complicated. Not only does it have safety components, but it also has legal and housing components.

The employees at Milo's assisted care facility argued with Corporate that Milo was not a wandering risk; he simply went for walks. They explained that he comported himself safely at all times: looked both ways before crossing the street, walked in crosswalks, and never started off in a given direction to only just keep going.

Horizon Bay's employees argued to Corporate that what Milo was doing was not wandering, But, they lost the argument with Brookdale Corporate, and Milo was evicted.

Warning Signs of Wandering

What is Wandering?

Ordinarily, wandering is associated with individuals, who are living with Alzheimer's, taking off in some undetermined direction, and continuing until they're either found--or not. As an illustration, long time Cape Cod reporter, Greg O'Brien explained about his own case of early onset Alzheimer's, "Sometimes when I am in my boat I want to head out to sea and just keep going."

But, from the Assisted Care community viewpoint, wandering can be any behavior that leads to a person leaving the property unescorted—leading to eviction and to deep family frustration and sometimes despair (see, for example, this piece written by Diana Hull about her experiences finding assisted care for her mother in Santa Cruz). It's frequently cause for automatic eviction, because of the legal liability it creates (however, memory care units, locked down, are usually available for an additional $1,500/mo.)

In other instances, understanding wandering is more nuanced, distinguished by its motivation. As one executive director of a high-end facility explained, "Wandering is driven by the need or desire to 'be free' and to 'escape.'" This is different from the desire to take a walk, get some fresh air--but with a likelihood of becoming lost--and, for example, asking for directions to get back to where one might be staying. While both would be a cause for assisted care eviction, only the former would actually be "wandering."

Importantly, in some quarters, there's a concerted effort to re-state wandering as simply "walking," and to de-stigmatize the behavior and explain that it's a healthy outlet for a variety of pent-up emotions and feelings that have the frustrations of memory loss and confusion as their motivating source.

With all that said, however, wandering can be absolutely dangerous. Three out of every five persons diagnosed with Alzheimer's will wander, and if they are not found within 24 hours they have a 50% chance of serious injury of worse.

The Cure may be worse than the Illness

Family caregivers face tremendous pressures and responsibilities for guarding the physical safety of their loved ones with Alzheimer's. Legal pressures to put loved ones with Alzheimer's in memory care are intense; lawsuits are always lurking around the corner. For examples, some law firms specialize in the wandering related litigation and place on their website the aggressive position that "Implementing a plan that involves putting that family member in a locked room…may be an important first step."

But this leaves families caught between a rock and a hard place, assailed from all sides. The financial and emotional pressures of family caregiving, to preserve their loved one's freedoms, are formidable. The fact is that moving their loved one to even the best Memory Care unit will result in an acceleration of their decline, and leave them in the equivalent of a minimum security prison, but with nicer gardens and guards. While Memory Care units claim that their residents "don't notice" that they're in lock-down, Maja Daniel's photo/audio essay, Into Oblivion, exposes that myth when she shows the scarring on the door of a memory care unit where the residents spend the better part of each day trying to break the lock that holds them in.

Because unchecked power over the vulnerable can breed bad outcomes

In Milo's case, the Brookdale facility offered that Milo stay for a month in their lock-down unit, until his family had a chance to find preferred accommodations. On the 7th day of his stay, he called his family to report that an employee at the temporary facility had tried to sexually exploit him. and Milo urged to leave immediately, which with the help of his family he did. The facility did not conduct a follow up investigation, but only commented that "Residents say things all the time to get attention."

But not all Memory Care units are nightmarish. A tour of the Fountain View Village in Fountain Hills, Arizona, is filled with residents exuding serenity and well-being; however, even there, when asked about the keypad next to the fourth floor elevator where the Memory Care unit was located, the Executive Director admitted that some living there do try to "escape" (sic).

An examination of the citations that adult care facilities are penalized with, for example in Arizona, did show that Memory Care units, overall, had many more citations than their assisted care counterparts. The oversight is simply not as thorough, and the residents are not believed. This is not surprising, though, as the well documented and discussed "Stanford Prison Experiment" showed that large power imbalances (locked-in) resulted in increasingly bad behavior by those in authority.

Glimmers of Light

Probably the most hopeful solution, to date, is the Dementia Village in Holland, where individuals with dementia live relatively unencumbered lives under the distant oversight of technology-aided caregivers.

Going forward, with the growing epidemic of Alzheimer's, old solutions of warehousing people "for their own safety" will need rethinking. Better ways to age-in-place, safely and with freedom, will have to take the place of the wander/lock-up pattern that currently exists in our Elder care system.