At last, here is the final installment of this marathon blog post. First, a brief recap, for those who just came in the door:
Part 1 advanced the idea that a locked door meets the definition of a physical restraint, and showed how the things that we do to keep people physically safe may actually erode their sense of emotional security. Part 2 affirmed that walking—indoors and outdoors—is both a normal activity and a fundamental human right. It also outlined in detail many of the structural, operational, and relational factors in the living environment that might cause distress or an increased desire to leave, independent of any brain disorder.
Part 3 provided some insights into how we can start to unlock living areas and enable more freedom of movement, with some illustrative stories from various communities that have ventured down this path. And now, as promised, we will conclude by addressing concerns around safety and risk; and I will share a story that beautifully illustrates many of the concepts involved.
For this discussion, I will summarize many of the points I presented in the “Security” and “Autonomy” chapters of my second book, Dementia Beyond Disease (which will be released in a mildly revised edition in a few weeks, shortly after the second edition of Dementia Beyond Drugs comes out.
There are two common operational practices that make it difficult for organizations to visualize a pathway to unlocking doors (and many other activities as well): all-or-none thinking and surplus safety. Let’s look at each of these:
All-or-none thinking is the tendency to see empowerment around dementia in very black-or-white terms, both individually (either he can do that, or he can’t) or as a group of people (either they can all do that, or no one can). This view is compounded by institutional processes that make it difficult to accommodate individual abilities, needs, and preferences. The result of their inflexibility is that organizations default to policies that restrict everyone in order to prevent the rare bad outcome.
Astute readers will no doubt see the parallel here with policies and procedures written around employees, which punish everyone in order to foil the rare “bad actor” who might try to game the system. In fact, such practices fail everyone. In the case of dementia, it confines those who are not at higher risk, and ignores the fact that those who are at higher risk also have needs to move and be outdoors. In the case of employees, it treats your best workers like potential criminals, and for those who have shown less initiative, it provides no pathway to help them grow to greater accountability in their work.
This feeds into the second issue of surplus safety, which views risk as only half of a two-sided coin. Many readers will have heard Drs. Bill Thomas and Judah Ronch speak on this topic. Here’s how I summarized the idea in my book (pp.117-118):
Traditional risk discussions focus on downside risk—the risk that an event will turn out worse than expected. If a person goes outside, what are the chances he will get lost, or walk into traffic? If he walks unassisted, what are the chances he will fall and be injured? If she goes to a social event, what are the chances she will be overwhelmed and distressed by the environment? When seen purely from this angle, minimizing risk seems reasonable.
But there is another side to the coin, which can be called upside risk—the risk that an event will turn out better than expected. Reconsider the above scenarios: If a person goes outside, what are the chances he will improve his conditioning and overall mood and sleep better at night? If he walks unassisted, could it improve his balance and even lead to greater independence with other activities of daily living? If she goes to a social event, could it bring meaning and growth to her as a person and forestall further cognitive decline?
Viewed from this angle, simply minimizing downside risk can stifle well-being. Indeed, there is often a connection: Reducing the chance of any bad outcome also reduces the chance of any good outcome. So safety and quality of life are often perched on a seesaw—when one goes up, the other goes down.
Surplus safety arises when we only seek to minimize downside risk without consideration of potential benefits. It is driven by a combination of a societal mentality of avoiding liability at all costs, plus the all-or-none thinking that blinds us to seeing that intermediate solutions exist that can manage risk within reasonable parameters, without leading to irresponsible decisions.
The upshot is that every decision is fraught with risk and a totally risk-free environment is not achievable. (Bill Thomas once said, “The only risk-free human environment is a coffin.”)
Of course, there are real risks with unlocked doors—getting lost, exposure to the elements, being hit by a vehicle, etc. And sadly, these have all happened. But to eliminate all downside risk is not only implausible, it also takes away any chance for a meaningful existence. It is impossible to engage in meaningful activity or have any opportunity to grow in a risk-free environment. So how do we balance this?
The key is that risk is never eliminated, but can be negotiated. In my book, I outline a seven-step framework that can help navigate this process. It is described thoroughly in Dementia Beyond Disease (Chapter 6), but here are the steps in brief:
- Hold a discussion of the desired activity and explore its meaning for the person and his/her understanding of the upside and downside risks involved;
- Explore the person’s values and tolerance for risk (not everyone views risk/reward the same way, so this must be individualized to have any impact);
- Look for the conditions and resources needed to help empower the person to succeed;
- Explore a continuum of empowerment, adjusting the parameters to balance autonomy and safety;
- Make a collaborative decision;
- Monitor outcomes and adjust the plan as needed;
- Keep other stakeholders informed of the process.
With this framework, it is possible to minimize the downside risks without reverting to blanket, or all-or-none decisions. Step 6 is important for two reasons: (1) the plan may not be perfect at the outset and may need tweaking after a period of observation, and (2) the person’s abilities and needs may change over time, requiring a revision of the plan.
Let’s look at a real-life example. This story comes from Heather Luth, the Dementia Program Coordinator for Schlegel Villages in Ontario, Canada:
“Henry” has lived at Wentworth Heights Village for several years. He has a diagnosis of dementia, and shortly after moving in, he became very distressed about not being able to exit the building. He became upset on a daily basis, repeatedly trying to leave several times a day and complaining about being kept inside. Heather continues:
“While in a conversation with him one day about how he was finding living at the Village, he shared with me that it reminded him of being at the prison camp. He then told me about how he was a spy and when he was caught he spent several years in a German Prisoner of War Camp. He then told me, ‘Here, I cannot even go out the front door, like everyone else. So I am a prisoner again!’
“I asked him, ‘Where would you go, if you were able to be get out of that front door?’ And he told me, ‘I would feed the birds and I would sit in the sun.’ And so, much to the protest of many of our team members, I started to teach him the front door code. It took about 2 weeks for him to learn the code and to realize that it had to be entered both on leaving and on coming back in. After two weeks though, he began going outside. He would bring breadcrumbs from breakfast to feed to the birds.
“For months, he faithfully would wait for me at the front door to park my car and then he would open the door for me and would offer to take my bags. He often stationed himself at the door, appointing himself as the doorman to assist many of our visitors as they came and left. And he would sit outside, soaking up the sunshine, making friends with the other residents who also wanted to enjoy the outdoors.
Now, the plot thickens a bit:
“After about a year, we started to notice Henry telling the neighbourhood team that he needed to get back to his old place, just to check on it. Of course, you can imagine our response. ‘No Henry, you don’t need to do that. Everything is fine.’ Or, ‘No, Henry, you have to wait till your son comes and he can take you there,’ while knowing that his son could rarely make time to visit due to the nature of his work.
“Finally one day, Henry went to feed the birds and then caught the bus and headed for his old neighbourhood. We found him exactly where he said he would be: enjoying a drink in his old pub, grabbing a bite to eat and visiting his old house. He was quite happy to see one of our team members and returned home to the Village without any protest. Maybe 6 months later this happened again, and once again we found him exactly where we would have expected.
“More recently, his requests to ‘go back home’ have been more frequent and our concern about his successful navigation to his old neighbourhood has increased. The team talked with Henry and he shared that it was important for him to get down there a little more regularly. To support this, they spoke to his son who authorized a companion who speaks in Henry’s first language, to be booked once a month for a trip to the old neighbourhood with him. It is now on his calendar and when he begins to talk to the team about needing to go home they can show him the date that has been booked to go with his new friend, and he looks forward to their date.
“He continues to go out to feed the birds, to hold the door open as a gentleman would, and soaks up all the sunshine that he can. From time to time he now needs someone to enter the door code for him, but we all do, as we know that having the freedom to come and go to enjoy the outdoors means the world to him!!”
Let’s look at the important elements of this story, and the process Heather and her team members followed. First, by discussing the situation with Henry, his history, perspective, and his needs and desires were clearly identified. It became clear to the staff that the “secure” door was making him feel very insecure.
Another point is that Henry was able to learn the door code, albeit with a fair amount of repetition. Patience and persistence are needed, but much learning is possible for people living with dementia. He not only engaged with the outdoors and the birds as he wished, but he spent much time beside the door letting visitors in, which gave him a chance to be helpful to others (I visited Wentworth Heights back in May, and Henry let us in as well, four years after this story began).
Now let’s examine the “wrinkle” in the story. Henry’s needs increased, and he ended up catching the bus to his old neighborhood. It turned out that he didn’t really need to go to his home, but to his favorite haunt where he had spent many a pleasant day in the past. Even though no injury occurred, many teams would have stopped his outdoor privileges the very first time this happened.
However, the Wentworth team took a deep breath and looked at the individual situation at hand. Henry showed purpose and knowledge in his execution of the bus trip. He was found where he said he would be and faring quite well, happy to return to the Village when the team member appeared to pick him up. His executive planning appeared to be relatively well preserved for this activity. So the team kept the plan going—albeit with the knowledge of this additional activity being a possibility—and monitored him closely.
In four years, Henry has taken the bus to his old neighborhood three times without incident. His abilities are slowly changing, but the team continues to support him and monitor him for needed assistance and structure, and they have come up with a plan for regular trips with a volunteer. Does this plan still involve some degree of downside risk? Absolutely!
But let’s look at the upside as well. His well-being and ability to find different outlets for meaningful engagement and growth have been greatly enhanced by this plan. If they had not given Henry the door code (or had taken his privileges away after the first trip) what would the result have been? Daily distress, anger, and anxiety, loss of a sense of purpose, and quite likely a psychotropic medication that would have increased his risk for morbidity or mortality.
I am not here to tell you the exact answer for each person you support. But here is a great example of the need to individualize every decision and to not simply fall back on institutional processes when human rights are at stake. And if the concept of individualized approaches seems overwhelming to you at this point, then that is a sign that your organization has a lot more transformational work to do before you can create the kind of flexibility and collaboration that enables such approaches.
This is why culture change will always be at the heart of high quality care for people living with dementia.
One last comment: An injury or death after leaving a building is a serious event, and would likely be reported all over the news. The gravity of such outcomes is not to be minimized. But for every person who actually suffers such a fate, how many people on a daily basis are forced to live with anxiety, fear, and life-giving needs that remain unmet? Or withdraw and give up on life, as many prisoners of war have done? Or become overmedicated with dangerous and sedating drugs as a result of their distress? Hundreds? Thousands?
These are also very newsworthy negative outcomes that will start to be more widely publicized as consumer awareness grows, just as physical restraints and antipsychotics saw a wave of bad publicity and advocacy that forced us to rethink our practices.
We must always negotiate risk, balancing it against the ability to live life to the fullest extent possible. Good luck in your efforts!