Fake bus stops for persons with dementia? On truth and benevolent lies in public health

As the number of persons with dementia (PwD) rises, strategies are being developed to address their needs [1]. One serious problem associated with dementia is wandering. Wandering can be stressful for caregivers and healthcare institutions.

Fake bus stops are one attempt to prevent PwD from wandering within, as well as, out of, nursing homes. These stops are sometimes outfitted with information boards, fake timetables, and actual bus stop signs, but a bus is never actually going to arrive. Benches or booths simply resemble real bus stops and are erected in the corridors of nursing homes or in the facility’s garden.

Fake bus stops were introduced in Germany over 10 years ago, with the intention of reducing wandering among older individuals. However, their has been controversial [2]. This debate has become an international discourse in both the media and scientific publications. [3‐6] .

To illustrate the seemingly absurd use of these fake bus stops, some refer to famous plays like “Waiting for Godot” (in which two characters are waiting for the arrival of a person called Godot, who never arrives) [7, 8] or the film “The Truman Show” (in which the main character, Truman Burbanks, unwittingly participates in a television show built around his simulated life) [9, 10]. The relevant and controversial nature of this topic was further illustrated by the animated short film by Australian director Adam Elliot, named “Harvie Krumpet”, which depicted a fake bus stop. In two short scenes, the main character, Harvie Krumpet, who is diagnosed with Alzheimer’s disease, sits at a fake bus stop waiting for a bus that never arrives. After its premiere, the short film received international attention and even won an Academy Award for Best Animated Short Film in 2004 [9, 10].

Fake bus stops may restrict PwD’s autonomy and can lead to their stigmatisation. As a direct result of PwDs’ cognitive deficits and inability to understand, one can argue that they are being taken advantage of in this fake bus stop illusion. Debunking this deception may cause distress to a person with dementia. Hence, this raises the question whether building fake bus stops thoughtlessly could cause more harm than benefit.

Despite the controversy that fake bus stops may cause, it has alos been also argued that the use of fake bus stops in nursing homes for older persons may help improve the care of PwD by giving them a place to go when they are inclined to wander [4]. There are those who claim that in selected cases, fake bus stops can provide a safe retreat for PwD, which prevents PwD from walking out onto the streets.

This article discusses the ethical issues of using fake bus stops and deliberates on good clinical practice in dementia care. Are fake bus stops an appropriate strategy for Israeli nursing homes to keep PwD from wandering? If so, does their potential benefit outweigh the potential harm they may cause? And finally, what ethical considerations should Israeli practitioners and nursing homes consider before building fake bus stops?

In addition to ethical dilemmas, there are also a range of risks involved in fake bus stops. Some risks were mentioned earlier, such as: the negative impact on interpersonal relationships, damage of trust to relationship of the PwDs with their caregivers, families or friends when a lie is discovered as such [34] and potential stigmatisation of PwD. Fake bus stops are built to offer an alternate reality to PwD. To achieve this, nursing homes use authentic looking elements to enhance the experience as a real one. Nursing home visitors, in contrast to PwD understand the deceptive nature of fake bus stops and are likely to conclude that individuals who sit at these stops suffer from dementia. Individuals not suffering from dementia may pity PwD, or even mock and deride them for not understanding the deception and instead choosing to sit at a fake bus stop. Setting up fake bus stops in corridors or publicly accessible places in nursing homes puts PwD, who are already more vulnerable due to their impaired cognition, at a higher risk of being stigmatised. Thus, when setting up fake bus stops, nursing homes should always consider this risk of choose a more private place over a crowded and public one to erect fake bus stops. Thus instead of building fake bus stops in corridors, foyers, or entrances of nursing homes, they should instead be built in common and recreational rooms. While it is not possible to dissuade people from judging those with dementia, it is the caregivers’ obligation to ensure the well-being of PwD and to minimize the exposure of their cognitive deficits to others.

Deceiving PwD at fake bus stops can infringe upon their right to autonomy. As their loss of cognitive functions progresses in PwD, they may lose the ability to differentiate between a truth and a lie. To debunk a lie, the person who is lied to must know the real facts behind the false statements. Mental orientation in time, space, and recognition of people are fundamental to this capacity. These abilities usually begin to disappear as cognitive symptoms of dementia intensify. It is therefore more controversial to lie to PwD than to people with unimpaired cognition since PwD lose the ability to detect when they are being deceived.

Without the cognitive ability to realise whether a situation is deceptive or false, PwD cannot choose to leave the situation. When confronted with fake bus stops, PwD are not able to choose the truth over the lie because they do not comprehend the deceptive character of fake bus stops. Therefore, PwD are deprived of their choice to leave fake bus stops, which means that the autonomy of PwD is diminished – both by dementia itself, and by fake bus stops.

Another argument against fake bus stops is that it may worsen the PwD’s confusion. As PwD lose their cognitive functions, they can also lose their comprehension of ordinary situations. In losing their ability to comprehend situations, they occasionally do not understand that it is not possible for a bus to arrive inside a nursing home, or they integrate the bus stops into their own self-created reality. PwD sometimes experience and interpret situations and surroundings differently, which can, in some instances, be difficult to understand for people without dementia. The Mental Health Foundation alludes to this confusion and argues that fake bus stops could even intensify it [36]. Furthermore, depending on their cognitive state, PwD are sometimes able to debunk a deception. By understanding that they were deceived, it may harm their well-being. Consequently, there is a risk that fake bus stops can also worsen PwDs’ well-being. As mentioned earlier, fake bus stops may not only harm PwD, but also affect the relationship between the caregiver and the PwD. As Maartje Schermer argues: “Lying to or deceiving PwDs can severely damage trust and so undermine the care relationship” [37]. M Schermer [37] refers not only to the damaged trust between caregivers and PwD that result from lies, but also to the damaged trust in an entire practice of care. A care relationship is based on mutual trust. By employing deception as a common practice, nurses and practitioners could forfeit the trust of the general public. When people observe a nurse or physician being dishonest to PwDs, it may cause distrust in healthcare professionals. Lying to or deceiving PwD, then, might not only harm PwDs but, in the long term, may also harm the perception individuals have of health professionals as well.

Physical and psychological comfort is a subjective measure, which individuals with dementia often cannot express verbally. For this reason, thoughtful caregivers who are familiar with the person with dementia, and are able to interpret the PwD’s behavioral symptoms, play an important role in providing insight into the effect of fake bus stops [20, 38, 39]. Caregivers, who are able to recognise behavioral signals in a PwD, are essential in dementia care. Caregivers who understand the PwD’s behaviour can provide care designed specifically for the needs of the individual with dementia. Training and support of care home staff can also result in a decrease of use of antipsychotic medication without worsening behavioral symptoms [38].

This emphasises the need for training and guidelines for staff about how to communicate with PwDs. Lying, although it should be avoided, can be acceptable under certain circumstances and care staff should be trained to lie in a respectful and ethical manner, while acting in the PwD’s best interest [30, 31]. This argument is reminiscent of the Declaration of Geneva, which physicians, worldwide, regard as their guiding principle. One of its first sentences is: “the health and well-being of my patient will be my first consideration” [40], which supports a consequentialist view by putting the best outcome over veracity. Only in the sentence afterwards is the indication given to autonomy and dignity of man. Literally, it states: “I will respect the autonomy and dignity of my patient”. By putting well-being in such an outstanding position (“first consideration”), one could conclude that well-being is of greater value than autonomy and dignity of man. Surmising that fake bus stops do enhance the well-being of PwD, one could conclude that they are a permissible method for PwD, because it seems more important to enhance well-being of the individual than to respect the person’s autonomy in the Declaration of Geneva.

It has been argued that while lying or “therapeutic lying” [30, 41] to PwD is accepted under certain circumstances, it should always be treated as a last resort [42].

Several non-pharmacological methods are worth noting as presenting alternatives to fake bus stops. One is a preventive solution called “subjective barriers”, which are barriers that are perceived and managed differently by each person [43]. An example of such a subjective barrier is a special door, which is too heavy for older adults to open. Another strategy is to disguise the ward exits, so PwD do not recognise them as such, thus presenting an almost insurmountable barrier for them to exit through. At the same time, a person without any cognitive impairment can identify the exit as such and overcome the disguised barrier easily. However, ethical considerations need to be taken into account since subjective barriers might restrict the PwDs’ autonomy, by restricting their privacy and causing them discomfort and boredom in situations where they require movement [44] . However, evidence is lacking to claim that subjective barriers prevent PwDs from wandering [44].

Another solution to keep PwDs from wandering is monitors and trackers that can be used to locate lost PwDs. This intervention has been met with controversy [45], and it has been argued that some of these measures restrict the PwD’s right to privacy [46]. Lastly, a more confining solution is the care village, such as “De Hogeweyk” near Amsterdam in the Netherlands, which is spacious yet contains only one inconspicuous main exit [47]. The concept of the care village is praised by some as an innovative solution [48, 49], yet there is also concern because the village itself can be seen as a form of “benevolent manipulation” [50].

To conclude, these alternative solutions pose similar problems to those of fake bus stops. In the following section, I will discuss how fake bus stops can still be a viable option to address the issue of wandering PwDs and assess whether or not they could provide an appropriate solution.

To date there are no studies, which explored the benefits and risks of fake bus stops for PwDs. This limitation restricts the article’s discussion to experiences with alternative interventions, ethical arguments and practical experiences in regard to lying and deception. This also highlights the need for future research on the impact of fake bus stops.

Discussions with practitioners reveal that fake bus stops are very well received and PwD benefit from them. According to practitioners and caregivers, fake bus stops decrease the level of agitation and restlessness of PwD sitting at them [2].

Since fake bus stops in nursing homes resemble government issued bus stops in Germany, they have the potential to evoke memories PwD associate with real bus stops. These evoked memories could encourage social interactions among PwD, drawing on their personal experiences with bus stops. This could positively mitigate not only wandering, but also apathy in PwD.

Fake bus stops are intended to benefit PwD. Their purpose is to decrease wandering by giving PwD a place to go to and prevent them from walking on the streets. Some Practitioners argue that fake bus stops are effective in preventing PwDs from wandering and thus have the potential to enhance their well-being [4]. Moreover, lying and using deceptive techniques should only be done as a last resort [42]. The first choice should always be a non-deceptive method of care. Deception should never outweigh or replace truthfulness even when there are benevolent intentions motivating the deceptive act. The ethical standards of the medical profession should always be considered, e.g. the Declaration of Geneva by the World Medical Association [40] and the Hippocratic Oath. The Declaration of Geneva binds to prioritise the patient’s well-being and respect her or his autonomy. Respect for autonomy, is also one of the four key principles of biomedical ethics [51], and of great significance for patients in all fields of medical care. Therefore, people without dementia - whether caregivers, practitioners or relatives -, are obliged to examine closely and critically the purposes and intentions of the techniques that are used in interaction with PwD. This does not mean that deception in clinical routines is categorically inadmissible, but that one must carefully weigh the potential harm against the potential benefits. Ideally, PwD are to be included in the decision-making process to preserve their autonomy and freedom.

Arguably, the intention of building fake bus stop affects its permissibility. If the bus stop is intended to benefit PwD by alleviating psychological symptoms, then it is ethically permissible. If, however, the intention of fake bus stops is to make care less time consuming – which is very important for healthcare systems due to the lack of personnel – and to park challenging PwD at those stops, then building fake bus stops should be avoided and other options should be considered.

When considering the implementation of fake bus stops, care facilities should be aware of the following points:

1. Design: A less authentic design is less deceptive, and therefore less harmful to the PwD. when debunked. Additionally, a comfortable design is to be preferred, so that people without dementia may also enjoy sitting at the installations. For example, by adding bookshelves, comfortable sofas, and pictures, fake bus stops could be modified to recreational stations, encouraging social interaction and avoiding singling out PwD thus reducing the risk of PwD’s stigmatisation. Another way to limit PwD’s stigmatization is placing the fake bus stops in the common rooms rather than in the hallways or door entrances. Moreover, by modifying fake bus stops with pictures or screens with movies of landscapes, one could create a place where people are encouraged to share their travel experiences. This could create a place that stimulates interpersonal exchange not only between PwD, but among everyone who wants to get involved. This implementation would strengthen the exchange between PwD, relatives and staff.

2. Intention: A fake bus stops should only be implemented to enhance the well-being of PwD, not to replace interpersonal interactions. Thoughtful caregivers are needed to detect the psychic condition and needs of PwD when sitting at fake bus stops.

3. Potential harm: Although fake bus stops seem to have positive effects on well-being of PwD, caregivers should always be aware of the potential harm they can cause. As soon as a negative effect is noticed, nursing homes should abstain from this method.