After my brother-in-law’s father—a dementia patient—took an unannounced walk, lost his phone and remained missing for several hours, the family thanked their lucky stars their dad was found safe.  But the relief was only temporary, as the family grappled with new questions:

• How are we going to keep Dad from running off again?
• If we lock him up at home, is that wrong?
• Is it time to put him in an assisted living facility?

Wandering is dangerous stuff indeed.  6 out of 10 Alzheimer’s patients will wander.  Jaunts around the house can result in major falls, and runaways face even graver risks.  Of patients found within 12 hours, 93% will survive, but 80% of those lost more than 72 hours will perish.  When patients are found alive, their wandering episodes often hasten the transition to assisted living facilities. 

Considering the risks of wandering, it seems understandable that caregivers and families would impose “lockdown” on dementia patients.  Babies can fall from heights, so we place them in a crib.  Children open car windows and jump out, so we activate childproof door locks.  But we should think twice about doing the same for seniors, whose needs are markedly different from children’s.

‘Wandering off’ anxiety

Research suggests that wandering may be beneficial for dementia patients, at least in some circumstances.  Social gerontologist Johanna Wigg theorizes that wandering is “the body’s response to anxiety, since it offers the physiological release needed to lessen feelings of anxiousness.”[1]  In other words, patients might be able to wander off bouts of anxiety.

Think about how walking around the neighborhood, meandering around your garden or window shopping might improve your mood.  These acts of moving meditation allow us to find rhythm and release.  Fighting with your spouse?  Walk it off.  Cabin fever?  Walk it off. 

We treat wandering as an undesirable symptom of the disease, but perhaps we’ve been too quick to judge.  Social theorist Michel Foucault believes that “medicalizing” and pathologizing behaviors like wandering encourages social control—making it socially permissible to confine patients physically and dope them with dangerous drugs.[2]  Wigg turns the tables on wandering:

Instead of pathologising wandering as a component of the biomedicalisation of dementia, redefining wandering as purposeful and therapeutic in long-term dementia care may create more elder-friendly environments of care that focus on the needs of the individuals who wander.[3]

Lockdown vs. Open Door Policy: two case studies

Wigg published a study in 2010 of two memory care centers with differing philosophies.[4]  At a larger, more expensive facility, residents were on full lockdown.  Exhibiting anxiety over their inability to leave, patients congregated by the exits, discussed their (perceived) imprisonment and plotted mostly unsuccessful escapes. 

At the second facility—a smaller, inexpensive rural home with a higher staff-to-patient ratio—patients were allowed to leave.  Upon their exit, an alarm would sound, employees would follow patients from a distance and ultimately escort them home.  Wigg observed that even anxiety-ridden wanderers were noticeably calmer after walking it off.  Residents also engaged in light gardening and planned outings around the property.  Many of those who had transferred from locked facilities were able to reduce or discontinue anti-anxiety medications at this rural house.[5]

Issues with lockdown

What are common techniques of senior lockdown?  Exits and windows may be obscured by curtains, creating a Sartre-like purgatory where patients are unable to ascertain their whereabouts or the time of day.  For dementia sufferers—already experiencing great confusion from the illness itself—this ambiguity is particularly problematic.

In the larger facility from Wigg’s study, egress was visible but inaccessible, promoting an obsession with captivity and escape.  Patients at this center were also confined to chairs with trays to prevent falls, which ultimately deteriorates patients’ ability to walk.  Though few facilities use traditional shackles, these trays are still unnaturally confining over long periods of time.

The other method of lockdown involves so-called ‘chemical restraints’—anti-psychotic drugs intended for controlling undesirable behaviors.  In addition to increasing patients’ risks of falling, these over-prescribed, dangerous pharmaceuticals turn patients into zombies and even kill them.[6]

‘Safe wandering,’ on the other hand, is 100% drug-free.  In a U.K. study, led by Eleanor Bantry-White, GPS trackers were used to promote safe wandering in dementia patients living at home with a caregiver.[7]  GPS trackers successfully increased caregivers’ sense of freedom, in addition to patients’.  Unpaid caregivers’ mental health is often compromised, so allowing them a moment to catch their breath or use the restroom might save more lives.

White’s study noted one major drawback: when tracking technology fails, the patient could face grave danger.  After all, a sleeping sentinel is more precarious than no sentinel at all.  If the batteries die, or the patient takes off the tracking system, the patient could be forever lost.  This is why it is crucial to select the most appropriate system, and to check batteries and functionality routinely. 

We must acknowledge that safe wandering is not always possible.  Every patient has different needs, and not every facility or home is set up to promote wandering 24/7.  Inclement weather, an urban setting or a lack of caregivers can limit the feasibility of free roaming.  Depending on the patient’s stage and physical condition, only certain levels of wandering may be appropriate (i.e., inside the home, as opposed to off premises).

How to wander safely

To promote safe wandering inside the house, the patient should be allowed to remain ambulatory—at least for part of the day.  Simple babyproofing techniques can prevent falls, so look for loose extension cords, lamp cords and any other tripping hazards.  Safeguard second-story windows, install night-lights, and consider using video or audio monitors.  If stairs are a risk, then try using a baby gate when caregivers can’t follow.  Also, please be warned that locking an unattended patient inside the home can prove dangerous in a fire, earthquake or other emergency situation.

For wandering unaccompanied outside the house, families should follow safety protocol.  (Even if you decide against safe wandering, you might want to prepare for a breakout.) Tracking devices can be worn in shoes, around wrists, as a pendant or in patients’ phones.  A bell placed above a door or a pressure sensitive alarm under a mat can also alert caregivers to an impending situation.  Consider subscribing to the Alzheimer’s Association safe return program, which offers 24-hour access to support and an identification bracelet (https://www.medicalert.org/alz?selected=Membership%20Services_Membership%20for%20Adults_MedicAlert%20B%20Safe%20Return). 

Other tips: keep a recent picture of the patient handy, a list of numbers of people who could help, medical records and some unwashed clothes in a bag for police dogs to sniff.  Know your neighborhood and its pitfalls (open bodies of water, large intersections, stairwells…).  Have the patient wear an identification bracelet or tag with her name, address and phone number, or sew it on her clothes. 

Wandering patterns

All dementia patients have different needs, subject to change.  What works for one patient may be entirely ineffective for another.  Try your best to understand your loved one’s desire to wander.  Does he roam at the same time every day?  Could she be hungry?  How is the episode usually resolved?

By observing these patterns, and talking with your family, the patient, medical professionals and caregivers, you can design a lifestyle that balances the patient’s desire to roam with the risks of falling/getting lost.  The good news is that environment directly impacts dementia sufferers’ quality of life, so you can make a difference. 

[1]Wigg, J. M. (2010). Liberating the wanderers: Using technology to unlock doors for those with dementia. Sociology of Health and Illness, 32, 291.

[2] Foucault, Michel. (1995).  Discipline and Punish.  New York: Vintage Books. 

[3] Wigg, p. 299.

[4] Ibid.

[5] Ibid, 297.

[6]Maust, Donovan; Kim, Hyunjin; Seyfried, Lisa. “Antipsychotics, Other Psychotropics, and the Risk of Death in Patients With Dementia: Number Needed to Harm.” JAMA Psychiatry, 2015;72(5):438-445.

[7] White, E. B., Montgomery, P. and McShane, R. (2010). Electronic tracking for people with dementia who get lost outside the home: a study of the experience of familial carers. British Journal of Occupational Therapy, 73, 152–159