Recently, I posted a provocative argument for considering locked doors as physical restraints. I have received many comments about the post; and as promised, I am following up with a second installment (of three), in which I will give some guidelines for those who wish to take up the challenge.
Grab a cup of your favorite beverage—this is not a short post. Unlocking doors is neither quick nor easy; otherwise everyone would be doing it. For those who cannot visualize how this can be done safely, much groundwork may need to be done before you can succeed.
In this installment, I’ll start with a few general comments, and then address issues around the person’s current living environment.
First off, it is important to emphasize that we will never succeed in this endeavor until we believe it is possible. Those who continue to embrace medicalized views that blame “wandering” and “exit-seeking” on brain disease will not have the insight to recognize the structural, relational, and operational factors that contribute to the situation. (Photographer Dewitt Jones once said, “People say, ‘I’ll believe it when I see it’; but I say, ‘You won’t see it until you believe it.’”)
So, as I mentioned in Part 1, it is best to start by imagining that people’s perambulations are not random but purposeful, even if that purpose is not immediately obvious to us. Let’s also drop the “wandering” and “exit-seeking” terminology, so as not to overmedicalize people’s actions. This is not simply a “BPSD” (Behavioral and Psychotic Symptoms of Dementia). When you see the person instead of the disease, you can see agency instead of confusion.
Second, keep in mind that every one of us walks every day, whenever and wherever we wish. So walking—inside and outside—is normal behavior. It can certainly relate to a person’s distress or indicate an unmet need, but often it is merely an expression of that which the rest of us take for granted.
Having said that, there are two broad topics we need to explore. One is to look at the attributes of our current care environment (structural, relational, and operational) that might cause a person to become distressed or express a need to go elsewhere. Until we address these, the number of people wishing to leave at any given time will make it much more challenging for us to accommodate them.
The second broad topic is to apply the use of design, technology, and operations to afford people the right to walk freely and safely when they wish to do so. That will come in Part 3.
Now, let’s go deeper, behind the scenes. Let’s look at the subtle factors that may underlie people’s desire to leave. Unless these are recognized, all the technology in the world will not suffice to provide a sense of well-being. This discussion will not be exhaustive, but will give enough examples to get you started on auditing your own community or home.
Let’s start with the structural design, which is easiest to visualize and is also a very important factor. And as I often do, let’s employ The Eden Alternative Domains of Well-Being™ as a framework. In my adaptation of this model, I use the following ordering of the seven domains: identity, connectedness, security, autonomy, meaning, growth, and joy. If these are truly universal human needs, then we can look to see how well the built environment succeeds in these areas.
People desire comfort and familiarity (identity, connectedness). When living with changing cognition, they particularly need an environment that is not overly stressful or challenging to navigate (security, autonomy). The environment also needs to support their continuing sense of purpose, ability to engage and evolve as a person, and desire to be happy and content (meaning, growth, joy). In many ways, most long-term living environments fall short.
The layout of many living areas is not what anyone would encounter in her/his own home: long hallways, with door after door after door. There might be a “memory box” outside one’s room, but how much does the person relate to what is placed inside it, among the sea of boxes along the wall? Is it at the appropriate height for someone standing or sitting in a wheelchair to see? And does one hallway look like another?
A company in Netherlands is producing customized door overlays that resemble the outer door of the person’s previous home. Of course the attributes of the room behind the door also need to preserve one’s sense of home, in order for this to be successful.
What personal furniture and belongings do people have, and do these trappings continue to hold meaning for them? Did they give input in setting up the room to their liking? Is the person in a double room, which introduces another aspect foreign to our own homes? Is there anything outside the bedroom that holds meaning for the person, or will they feel ill-at-ease and disconnected in the public areas?
What about lighting and sound? A noisy or chaotic environment can cause distress and fuel the need to get away. Inappropriate lighting, color, and contrast can also confuse or disable people trying to navigate independently. (See Dementia Beyond Disease for a detailed discussion of these.)
All of the other intrusions of institutional living (overhead paging, nursing stations, med rooms and utility rooms in prominent locations, bed and chair alarms, crowded living areas, etc., etc.) should go without mentioning.
Look at all of these things very closely if you have a number of people who are constantly trying to leave—there is a good chance that you are causing their distress, not the dementia! (I’ll repeat that caution for the next two sections as well.)
Also, remember that it is not enough to fill a person’s room with trappings of a past life. This may only increase their desire to “get back home.” If we are to create home for people, we need to create that nurturing place within their new environment, or it simply reminds them of the old one they have lost. That means understanding how one’s identity evolves over time, and creating meaningful and individualized engagement and connections within the new living environment. Think of all the things that “home” means to a person—to what extent are we providing each of these?
Lastly, does your community look more like a luxury hotel or a fancy shopping mall than a home? It may look good on the website, but is it providing a sense of home for those who live there, or is it creating a sense of displacement—“I don’t belong here,” “I can’t afford this,” “I need to get home,” etc.?
Many structural changes can be made, short of tearing down the building and starting over. Examples include: breaking large living areas into smaller ones (using relatively low cost renovations, half-walls, creating households within neighborhoods, etc.); removing nursing stations and substituting a den, library, or sitting area with a desk; eliminating pages, intercoms, and alarms; attention to other aspects of noise, commotion, lighting, décor, and the color contrast on flooring or doorways.
And if you decide to renovate or build anew, stop building double rooms. I have never met a person outside the nursing home that would want to live in one if given the choice—you may well be building your own future home! The Green House Project has proven that we can have superior outcomes for the same or lower operating costs, using private rooms and en suite showers; and any potential cost savings in the construction of double rooms are outweighed by the loss of privacy, security, sleep quality, infection control, roommate conflicts, etc.
Are you getting the hang of this? Until we stop driving people away from their living areas, it’s hard to unlock the doors safely. On to relational and operational factors…
I have said many times that I truly believe that if we had dedicated staff assignments and used optimal communication and facilitation skills in our daily interactions, over half of the distress we see would disappear without any other interventions. My seminars and books devote a lot of time and ink to basic face-to-face interactions, because the way in which we relate with people can have tremendous effects on their well-being or ill-being, and their desire to stay or leave.
When our interactions do not recognize and support the person’s identity, and when we present people with lots of strange faces (either through staff rotation during care, or the appearance of people entering or cutting through the living area that don’t belong there), we erode familiarity and the trust that this is a place where they want to spend their days. When we erode people’s security (e.g., staff rotations, entering rooms unannounced, standing over people when we talk ) or autonomy (deciding for, doing for, not asking for input and guidance, not taking time to understand or be understood) people will naturally seek it elsewhere.
As implied by the above, relational factors can exist in the moment, but are also an outgrowth of the operations that underlie them, such as rotating staff assignments. (If you want to see the full reasoning behind my contention that 100% dedicated staff assignments “should be considered the standard of care”—and all the evidence behind that claim—see Dementia Beyond Disease.)
Examples of other operations that disrupt and distress people include: changing people’s rooms at our convenience; providing generic, diagnosis-driven activities that hold little meaning for the individual; following an organizational hierarchy that does not give hands-on staff the autonomy or flexibility to answer the needs of the moment; or trying to squeeze people’s unique rhythms into institutional schedules of waking, sleeping, and all the activities in between.
I will not revisit my arguments against segregated “memory care” here, but my books list a variety of ways in which such environments can further erode a person’s sense of well-being.
Before we wrap up, keep in mind that all of the above principles have counterparts in community-based living; in particular, the relational and operational aspects of daily life. Even a very familiar physical environment ceases to feel like home when one’s well-being is not supported in everyday life; and people’s desire to leave (even to say they want to “go home”) can be just as intense in their own houses. Dementia Beyond Disease discusses community-based living in much more detail.
Once again, until we have addressed all of the above factors—most of which would also bother any of us in our own living environments—we can’t even begin to consider brain changes as the causative factor for the person’s actions.
I think that’s a lot to chew on for now. Try auditing your own care environments—structural, relational, and operational—and see what else you can find. The path to unlocked doors may still be a long journey for your organization. But that’s all the more reason to start today, because—like other physical restraints—it will become the norm in time. Will you be ready?
In Part 3, we’ll talk about ways to begin to make the move to unlocked doors, and I’ll share a few stories.