Lo-Jacks and Fake Bus Stops: The Brave New World of Dementia Care

Dementia and other cognitive impairments primarily associated with age take a heavy toll. Gradually the world around you becomes more and more confusing, and you have increasing trouble navigating not just your community, but your own mind. Often you are sentenced to life in a nursing home without the possibility of parole because no one is willing to care for you, willing to fight for community-based living for you, or able to support you—thanks to the lack of social services and support, many cases of effective forced institutionalisation occur every day as family members cannot (nor should be expected to) bear the responsibility of caregiving by themselves.

Wrenched from a familiar environment to a new one, it’s not uncommon to experience further disorientation and a drive to return home, even as the patient’s cognitive decline increases. One very common symptom and result? What’s known as ‘wandering.’ Older adults kept in nursing homes, assisted living facilities, and the like sometimes wander off, even under supervision, which can be extremely dangerous for them. They may fall, become injured, be unable to find their way back, or be exploited; people spotting their vulnerability might see an easy target for robbery, beating, rape, and other abuses.

Naturally, many facilities are concerned about wandering, and there are a lot of different ways to deal with it. The cruel option is to tie patients to their beds (yes, this is done), to lock patients in their rooms (also done) or to keep them on restricted wards (again, an option used in a lot of facilities). Others don’t want to restrict freedom of movement so they try to keep their grounds as secure as possible, and to have lots of supervision in place to reduce the risks that someone will go off-premises without an escort.

Sadly, it’s often assumed that wandering is rooted solely in dementia, rather than in something else; maybe a patient misses someone or something, is trying to return to a daily routine, or is trying to escape something. In the pathologisation of wandering as something undesirable that needs to be stopped or prevented, facilities are also neatly sidestepping the large issue: are patients, perhaps, doing it for a reason? Should those reasons be explored before assuming people are wandering because their brains are rapidly changing with age and/or progressive disease?

One consequence of wandering is that once a patient is off-premises and can’t be quickly located, staff are often forced to call the police. There’s an older adult in danger somewhere in the community, they can’t send out a massive search party without endangering their own patients, and they want to focus on getting a patient back to safety. Police officers are not really supposed to be providing this service, but they do, because they don’t want to leave someone in a vulnerable position, and they want to support community members. However, staff are well aware that relying on police for help with wandering patients is not a good long-term solution, and that they need more options for addressing the issue.

There are some peculiar solutions to wandering. Some facilities, for example, have chosen the fake bus stop trick: they install a bus stop that looks absolutely real, but no buses ever stop there. The idea is that patients will sit there waiting for a bus that never comes, thinking they’re getting somewhere, and they’ll be easy for staff to find. Staff then ‘invite’ patients back to the home so they can ‘wait until the bus arrives’ and thanks to the ravages to short-term memory associated with dementia, patients usually forget they were trying to leave.

This is, of course, deceitful. Which makes it troubling. The motivation may stem from a genuine desire to keep patients safe from harm, but it makes my stomach churn. Being honest with patients should be an important part of medical ethics for all patients, and using lies to cover up for a facility’s inadequacy doesn’t feel appropriate to me. If there’s a problem with patients who wander off, there’s clearly a problem with the level of security at the facility; perhaps it needs more staff to keep an eye on patients, it needs better fencing, it needs bigger grounds for patients to feel comfortable in.

Or maybe staff members need to investigate the possibility of abuse or unresolved issues to determine why a patient is so insistent on leaving. Maybe it’s possible a patient is simply stuck 20 years in the past, wanting to take a bus to get home, but dementia patients are often written off, and this isn’t advisable, as it makes it much harder to track down cases of potential abuse and other issues.

In another scheme, police proposed putting GPS trackers on dementia patients to make them easier to find. Idea being that when patients went missing, they could be quickly pulled up on a screen and located, limiting their risks in the community. I hope I’m not the only one who was appalled by the idea of forcing patients to wear such devices in an utterly dehumanising and inhumane scheme that would reduce them to little more than cattle that need to be tracked in the pasture.

Which isn’t to say I’m opposed to patient assistance devices. I know many older adults wear medical alert devices they can use to summon help, and GPS integration seems like it would be potentially very useful. For those who voluntarily choose such devices, or express an interest in them in the early stages of dementia or during lucid moments, I think they can be a perfectly reasonable option, because they reflect patient choice and autonomy. But when patients are deprived of dignity by being tagged like research animals, it sticks in my craw.

Older adults are still human beings. Dementia patients are still human beings. And they deserve dignity.