In the first installment of this marathon blog post, we reviewed the difficulties with living in a locked environment, and showed how features that create a sense of security for us may feel anything but secure for the person living there. The second part discussed all of the attributes of the living environment—structural, relational, and operational—that increase people’s distress and desire to leave.
It is worth repeating an essential point made in Part 2: Most of the distress and desire to leave that we see is not so much a function of brain disease as it is our inability to create an environment that meets people’s needs and supports their well-being. Until we recognize our own contribution to people’s distress and stop blaming “behavioral and psychological symptoms of dementia (BPSD),” it will be nearly impossible for us to truly succeed in removing this hidden restraint.
In this section, let’s assume you have begun to attend to the shortcomings of the care environment that were outlined in Part 2. We will now address the ways in which we can begin to move toward a less restrictive environment. Remember that walking (indoors and outdoors) is something we all do freely, every day, without even thinking about it. Therefore, we are not just doing this to alleviate distress, but also to affirm and enable everyone’s basic human right to be able to move freely.
Johanna Wigg published an excellent summary of the efforts of the Vicarage by the Sea (mentioned in Part 1) and another Maine home to use technology instead of locked doors. She rightly challenges the medicalization of people’s actions by our society. However, I would encourage her to go even farther in her writings and move away from terms such as “wandering behavior” and from a focus on neurochemical changes, to look more deeply into the many other factors that lead people to walk.
For those who are taking the first steps, there are many ways in which an organization can ease into an unlocked environment, in order to minimize downside risk and help everyone to adjust to new approaches. As far as interim measures are concerned, technology has a lot to offer, and it can be applied in many different ways. I cannot be exhaustive in this post; I would encourage you to read Johanna’s article in detail, and I will summarize a few other thoughts here.
Even though wander alerts and door alarms keep people from exiting a building, they can be used as an interim step to promote the ability to walk freely within a larger environment. When I worked at St. John’s Home in Rochester, NY—a very large complex of three connected multistory buildings—we moved toward alarming only the outer doors of the complex, rather than individual living areas or the interior courtyard. This gave people the ability to walk a great distance indoors and engage with such areas as the ice cream shop, library, and lobby/fireplace, as well as the nice outdoor courtyard in the center. A lockdown only occurred if the person tried to exit an outer door to the road or parking lot.
In communities that have a locked area adjacent to another living area, this approach gives people living with dementia the opportunity to range farther, and to mingle with others. (This is also a good interim step in desegregating “memory care” areas, as it slowly reintroduces people to their neighbors, increasing familiarity and helping remove stigma and fear. More on this later.)
Having access to enclosed outdoor areas also provides an opportunity for fresh air and exercise without the need for locks. The central courtyard at St. John’s is a good example. Here is a photo of the courtyard during a celebration of the completion of their 2009 renovation:
St. John’s two Penfield Green House homes have a shared garden/patio/gazebo area between the houses, surrounded by a wrought iron fence. This side door of each house is unlocked, which gives people direct access to an engaging outdoor space, and decreases their need to exit the front of the houses. Here is a view of the garden area, as well as a visitor from a local horse farm (all elders have photo releases).
But there is more to the Penfield story. As I detailed in Dementia Beyond Disease, when the houses first opened and the first 20 people (many of whom lived with dementia) were moved into the homes, there were several attempts made by residents to leave via the front doors. Wander bracelets were initially used, but because of the use of dedicated staff assignments and a gradual understanding and support of people’s individual rhythms and well-being needs, those attempts to leave resolved, and the bracelets were successfully removed way back in 2012. Now 4-1/2 years later, people live there comfortably, without the need for alarm bracelets and without the desire to leave that is common in most locked “memory care” areas.
In addition to anticipating and meeting people’s needs, the physical environment of the Green Houses and the easy access to the side garden help create a sense of familiarity, comfort, and independence. In addition, people regularly get out of the homes, either to help walk their dog (who recently passed away), go to the grocery store, or on a variety of other outings that are regularly planned by the staff. (All of the Penfield team members are CDL certified and can therefore take residents out with them using the house van.)
Once again, working proactively to keep people active and engaged in meaningful life helped eliminate what most people still consider to be “dementia-related behaviors.”
In multistory complexes, my preference would be for people living with dementia to live on the ground floor, to facilitate easy and safe access to the outdoors (reserving higher floors for those who are able to navigate more independently). But access to the outdoors can occur above the ground floor as well. In Emma’s Neighborhood at Arbour Trails (one of the Schlegel Villages of Ontario, Canada), people living with dementia have access to a beautiful patio that overlooks their lovely gardens, and also offers shelter from sun and rain:
Tracking devices such as GPS can also be used to help monitor a person’s whereabouts, both in long-term care and community settings. I should mention that many people living with dementia consider this to be an unacceptable invasion of their privacy. Therefore, I recommend (as with other alert devices) that all attempts should be made to use these collaboratively with the person, rather than without her knowledge.
In thinking about how I would feel in this circumstance, my best guess is that while I would not be thrilled about the idea of people tracking my movements, I would probably accept it if the only alternative were to move to a more restrictive environment. But each person has his/her own values regarding autonomy and privacy. In those cases where a person has left his/her home and suffered injury or death, a GPS might have been the critical factor in preventing serious harm.
The Vicarage uses a silent signal to the care staff when someone exits, and one of the staff then accompanies the person on their walk. They use an enriched staffing model and this has worked well for them; however for communities that cannot increase staffing, and must rely on Medicaid dollars, such staff ratios may not be achievable, and those without adequate flexibility and collaboration among staff will be hard-pressed to provide the one-on-one attention needed at times.
However, keep in mind that traditional siloed and hierarchical systems create inefficiencies that actually make it harder for people do to their jobs. Shifting systems is an essential part of creating the flexibility and empowerment needed to succeed. In addition, let me repeat that much of the reason we do not have the resources to help people to walk outside is that many of the environmental attributes discussed in Part 2 are increasing people’s needs and driving more attempts to leave than would be seen in an environment that better attends to well-being. The Penfield Green House story affirms this point.
By attending to many of the structural, relational, and operational factors outlined in the last post, the goal of unlocking doors becomes much easier to visualize, even without changing staff ratios, because the pressure to leave has been relieved for the people who live there.
Here is an example of a home that has removed their locked door with impressive results:
Dunbar Village, a retirement community in Bay St. Louis, Mississippi, offers assisted living and skilled and rehabilitative care. A member of the Eden Alternative registry since 2004, Dunbar Village is part of the SentryCare corporation. Their Camellia Place neighborhood for people living with dementia has had a locked door.
Recently (with some prompting from a keynote I gave at the May Eden conference), the staff discussed unlocking the door. Initially, some key people were involved, including Executive Director Amy Ivey, the Director of Nursing, and the CEO of SentryCare. The Director of Maintenance was also a key part of the planning process. After discussion and approval, huddles were held with other team members to let them know what was happening and how the process would unfold. Amy felt that it was important to create a sense of shared vision among staff, so that they could explain and reinforce the initiative when communicating with other elders and family members.
There was some initial apprehension about the plan, with some of those who worked on other neighborhoods worrying about people being a “flight risk.” The group proceeded slowly, first by disarming the door for three days, and then removing the door completely from its hinges!
The first one through the doorway was a resident’s pet dog, Harley. After that, people living on Camellia began to venture out—only a short distance at first, but then exploring more freely. In addition, those who lived on other neighborhoods began to enter Camellia Place, being attracted by the courtyard and deck that adjoined the neighborhood, which they did not know even existed. Other elders also began to visit Camellia to engage in their ice cream socials and other activities.
Amy reports that the constant distress—pushing and banging on the locked door and calling out—has melted away for the people living in Camellia Place. If anything, it was more of an adjustment for staff members, who initially would call Camellia staff to request that they come and pick up “their” resident. But very quickly the level of acceptance grew, and now the staff only give a call to let their co-workers know, for example, that if they are looking for “Mr. Jones,” he’s napping on their sofa. Family members have also quickly warmed to the change.
Perhaps most important is the way in which those living in different neighborhoods have connected and established meaningful relationships. Amy related to me how much of the fear and stigma disappeared with the door:
“I believe removing the door removed stigma and stereotypes. I believe it has humanized our elders on Camellia. Not that I think they were looked at as less than human…. I just think they were looked upon as “dementia” and “Alzheimer’s” more so. It was more likely that their diagnosis was their identity when the locked door was up, even though we educate and sensitize our care partners as much as we can to not let this happen. Nothing has been more powerful than physically removing that door.”
Since the door was removed, Dunbar Village is becoming increasingly “communal.” Amy adds: “I am realizing how much removing that door is connecting our Village. This is becoming more apparent as time goes on. Our care partners are teaming up with each other more and planning Village-wide celebrations instead of just neighborhood happenings. . . . There is so much more teamwork. Could it really all be due to the removal of the door? It sounds crazy…but I think it is.”
Here are “before” and “after” pictures of the doorway:
I heard a similar story last summer while facilitating a master class at the Dementia Training and Study Centre in Brisbane, Australia. One of the participants told me that she worked at a home that decided to unlock their memory care area. They also saw a precipitous decline in the level of distress among the people living there, once they were able to walk into the adjacent neighborhood.
One person with dementia who had previously shared a room with a woman who was bedbound was able to find her old room and reconnect with her prior roommate; they hadn’t seen each other since she was moved in to the locked area.
An interesting observation at the home was that on weekends, the staff would frequently re-lock the door during the morning medication pass and personal care rounds because they had fewer staff and felt they were less able to observe people at those times. But they found that each time they locked the doors, the level of distress predictably increased, and then diminished when the doors were unlocked once again.
Hopefully these examples will give you some ideas about how to approach such an initiative. I’ll repeat once again that the issues described in Part 2 must be addressed before you will get much traction with the steps described in this part.
As I mentioned last time, I truly believe that this is our future direction, as we have seen with other physical restraints. Keep in mind that the study of the homes in Maine that I referenced above was published in 2010—so they have been doing this for a long time! Even if you are far from the point where you can unlock your doors, it is time to begin the process!
Will these three posts convince everyone that such a future is possible? Not likely; there is still one big area of concern that will no doubt hold people back. That is the concern about risk and liability in such an unlocked environment.
Such concerns are real and not to be glossed over. They deserve a “Part 4.” So in my final installment at the end of the month, I will address these concerns. We will talk about the real risks we face, but also discuss a hidden risk that is not often recognized. We will touch on the concept of “surplus safety,” and I will share a 7-step process for negotiating risk that will be useful in your future efforts.
Enjoy the Dog Days of summer!