Where is Mother, or, when a dementia patient walks out

One of the scariest consequences of dementia is that patients tend to wander off.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (it isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active person walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, the dementia patient turns the knob. Nice weather, good breeze. Another step and the person is out of the house, and no one else knows. After walking a block or two, the dementia patient realizes that he/ she is lost. Agitation, confusion, fear set in. He/ she wants to return home, but is not sure of the address, or may he/ she remembers ‘home’ from a different city, a different age.

Some real life cases of dementia wandering:

A neighbor’s mother had dementia. The family members kept the door bolted (the lady was too short to reach the bolt), but one day, the maid left it open. By the time the family members realized the mistake, the mother was nowhere in sight. The frantic family rushed around, checking neighboring houses, pulling in volunteers, and fanning out for the search. The lady (and she was a frail woman) had walked three kilometres on a main road, and then stopped, totally lost. A passer-by suspected something was wrong and approached her; she did not know her name or address, and kept talking about her house in Srinagar, Kashmir (this was in Delhi). The gentleman took her to a police-station. He also spread the word in all his friends and relatives about a missing Kashmiri lady. After four hours of hell, the family got a phone call telling them that a lady who looked like their mother was at Trilokpuri police station.

My neighbors were lucky.

I know of another case where a wandering person had an accident–roads with honking,unruly traffic are dangerous places for dementia patients. And, horrors, a friend told me that her uncle had walked out eight years ago, and was still missing.

The possibility of a person with dementia wandering off is a nightmare for caregivers because it is impossible for them to keep a 24 hour watch. The problem is more severe for patients in early to mid stage dementia, who still walk well enough, are active, and think they need to do something, or investigate something.

So, what can a caregiver do?

In many countries, the problem of wandering is recognized widely and there are programs for ensuring early and safe return of someone who has wandered. (The US has a program called MedicAlert + SafeReturn)

I am not aware of any such systematic approach to wandering in India. The problem is worse because caregivers do not fully register that this could happen, and lack ideas on how to reduce it. Neighbors and friends are even more ignorant and assume methods used to discourage the patient from going out alone are “cruel.”

Here are some tips for dementia caregivers overwhelmed by the possibility of their loved one wandering from home.

  • Understand why dementia patients wander
  • Understand why our loved one wanders (what the person is trying to do, what triggers the need, what is the pattern of wandering)
  • Creatively minimize such triggers to reduce wandering
  • Have support systems around us to locate a patient who had wandered as soon as possible

Understand dementia wandering in general

In general, there are many causes or triggers that make the dementia patients wander, the underlying cause being the loss of memory and therefore a loss of a relevant context to act within.

For example, the person may want to go to their old office or home. He/ she may want to shop. Maybe it is time for the morning walk, or to drop by at neighbors. Maybe the person is not trying to go out, but is looking for the bathroom or kitchen or bedroom. Or he/ she sees a door and turns the knob out of habit. It is possible that the person is bored/ has excess energy and needs to walk it off. Maybe, the surroundings look very unfamiliar, so the person is trying to escape and return to a place that is his/ her own. (Links for a comprehensive general understanding are given below)

Understand why our loved one wanders

With a general understanding of why dementia patients may be wandering, and with our own knowledge of the loved one’s past, and his/ her current state, we are in the best position to identify why our loved one may wander.

We may know, for example, how particular Amma is about her morning walk, or how punctually Appa used to catch bus number 210 to go to work. We know how Dadaji always stepped out of the house when the smells from the kitchen became overwhelming.

We can study the pattern by studying when the patient gets restless or tends to wander. It may also be possible to detect patterns that precede actual wandering, for example, the patient may often pace a room restlessly and that may indicate that he/ she is about to wander out. The restlessness may be prompted by a particular time of the day (associated with a morning walk, for example) or a sound (doorbell ringing, sound of train on nearby track) or event (just after a meal, as the dementia patient may have been a smoker who used to walk out for a cigarette after a meal).

We can look at the time of such wandering, or the activity the person was doing before. Talking to the person just when he/ she is about to wander may give us more input on what ‘need’ the patient wanted to fulfill.

Reduce triggers for wandering.

Having understood the ‘need’ of the loved one that leads to wandering, we need to get more creative.

Remove reminders/ triggers/ props: We can, for example, remove props the patient is used to having when wandering out. If we know Appa is (in his mind) headed for office, we know he will look for his briefcase (or anything he may mistake for a briefcase) and hiding that may agitate him, but he may not think of going to office without it 🙂

Reduce chances of confusion: Confusion about surroundings is another common cause of wandering. If we realize that our loved one wanders because he/ she needs a bathroom, we know that solving this bathroom-search problem will stop the wandering. Maybe what we need is a sign on the bathroom, or to have a timetable to take the patient to the bathroom at regular intervals. For the night, instal night lights to help the patient locate the bathroom.

Make the exit less visible/ attractive: Perhaps the patient is attracted by the door, or fascinated by a knob. We can paint the door the same color as the wall, cover the knob with cloth so it matches the door color. We can re-arrange furniture and seating so the patient is not usually facing the door. If we find that the patient hesitates to cross a dark line on the floor (as many dementia patients do because they apparently think the floor is broken or something), we can place a band of dark tape a few feet before the floor. The solution, really, will depend on how the patient reacts to such things.

Get alerted at the earliest: An open door is always a potential route of escape. Maybe the patient can be in a room that does not have an exit out of the house, and any such exit is only possible through a series of other rooms, and hence more unlikely. We can put up latches on the main doors that the dementia patient cannot reach or open.

To be alert if the patient is opening the main door, we can hang bells / chimes on the main door, so that the sound can alert others. We can also connect electronic bell to the main door and keep it activated at night. Baby monitoring devices are available in the US: these may be helpful to monitor the patient when you are in another room.

Remove general triggers: There are also some general triggers that would make any dementia patient feel restless, insecure, or confused, and thus increase the chance of wandering. Keeping these in mind may help us remember to be very cautious. For example,

  • We should not leave dementia patient alone in strange places, or the car.
  • Patients are likely to get agitated/ confused by new stuff–places, visitors, crowded family festivities
  • Patients are likely to get confused by loud sounds and TV (unable to distinguish between reality and fiction)
  • Patients are likely to be more confused when they wake up, because they may confuse between their dream-world and reality, and may have residual anxiety after a nightmare
  • Some medication increases confusion/ agitation, and increase in tendency to wander may be correlated to introducing a new medication. Alertness on this will help take medical help in time.

Good explanations of possible causes of wandering (and what can be done) are available here and here.

Have enough support systems around us in case patient wanders

Regardless of what we do, there is always a chance of the patient leaving the house unattended. We also need support systems outside to keep damage from wandering at a minimum. While some of the measures could be related to locking garden gates, many depend on being able to use family, friends, neighbors, and police help.

To me, this is one area where things get tricky in India, because of the extremely low awareness of the wandering problem of dementia patients (indeed, extremely low knowledge of dementia as such). Ideally, we can:

  • Inform people around our residence about the problem and tell them what to do/ whom to call, if they see the patient walking alone. This could include neighbors, security guards, shop keepers and regular handymen (electricians, plumbers, gardeners) working around our residence. Let people know that we will appreciate their help.
  • Have an identification badge/ tag (name, address and emergency contact numbers) on the person, easily visible to others. This could be something like an id badge that people wear in offices, or something that is visible from the back. This is specially important when taking the dementia patient out (to a clinic, market or for an outing in a crowded area). (In the US MedicAlert + Safe Return program, the patient uses a special bracelet, and specialized services locate a return the person enrolled in the program)
  • Keep recent photographs of the dementia patients handy, so that people searching for him/ her can show it around – we should make sure that the photos are recent.
  • Keep phone numbers of people who can help.

Unfortunately, these are not so easily executed in India.

Firstly, many of us hide the fact that we have a dementia patient at home because there is a stigma of ‘mental illness’. We need to overcome this tendency and inform people about the medical problem and its behavioral consequences and dangers.

Even if we tell people about dementia, they tend not to believe. To most people here, dementia is equivalent to accelerated aging, and so the special nature and sweeping extent of confusion is not understood. Caregiver cautions/ steps are seen as laziness/ tyranny.

Here is a personal instance of how difficult it is: When my mother was in the early stages of dementia, she refused to accept the diagnosis, and forbade me from telling others (if I did, she claimed I was lying). Her room had a door and a window opening directly to a corridor outside our apartment, and whenever someone walked past, she would dash to the door to say hello. With increasing dementia, this started becoming a problem, because she would forget to come back in. (She absolutely refused to wear a name tag; she found it demeaning)

One day, she kept walking down the corridor, forgot why, and reached a staircase. She could not walk down alone, so she called a young boy to help. The boy (probably a kid who had learned how old ladies should be helped), helped her down the stairs and then ran off to play. Mother, left alone, and by now quite confused, kept walking and reached the road. I was returning from work and saw her; alarmed, I brought her back. She was very upset with me for bringing her back.

The very next day, I placed a lock on her door from inside, and told her she could take the key from me whenever she wanted to go out. The apartment had another door leading outside, but that was in another room–her problem was a knee-jerk need to step out when someone walked past.

My mother was furious. She complained to all neighbors, friends and relatives that I was torturing her, locking her in, imprisoning her. Most of them were fellow senior citizens, and they got angry with me and lectured me about it. I explained the problem to them and asked for suggestions, but they kept calling me cruel, and said they would not have tolerated their children doing this to them. They called me ungrateful and mean.

It hurt, it really hurt, but if I removed the lock, the danger was greater, and I knew no other way of handling it (I was not very well-informed then, and had no access to support groups). The problem was, my mother’s friends identified with her, and assumed her mental state was like theirs. They did not know the word dementia or understand it. It was only after the other episode (the Kashmiri lady mentioned above), that I was able to quote it and make people around me understand the consequences, and they became more supportive.

Luckily, awareness about dementia is growing in India, and maybe explaining such problems to neighbors and getting their support will become easier. However, in the early stages when the patient is able to hide memory loss from short-duration visitors, people may not believe that the caregiver is working in the best interest of the patient, and may be more critical than helpful.

What if we are walking down the road and see someone who looks totally lost?

The person can be a dementia patient. We should approach him/ her gently, and if possible go along with him/ her for a while on the walk and gently guide him/ her back home. We should not act hurried or anxious, as that emotion will transmit to the person.

The good news:

The fact sheet on dementia wandering states that: Six in 10 people with Alzheimer’s disease will wander. I assume that means that there are some who will not 🙂 Also, as dementia progresses, the deteriorating health of the patient may make it impossible for the person to wander.

What we must remember for our loves ones is that wandering is a possibility we must be ready for. It is a major issue in caregiving dementia patients, and considerable information is available on the links provided above and on www.alz.org. We need to apply the concepts in the context of our own patient, and even more, in the context of our own society and surroundings. I do wish that we, in India, develop a program for safe return of wandering dementia patients, and for those with enough energy to take on causes, here is a potential area to work on.

Edited to add:Subsequent to making this post, I have created a video that discusses the wandering problem and provide tips for family caregivers.

(Hindi version is available at: Dementia mein bhatakne aur khone kee samasya)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care in this set of pages: https://swapnawrites.wordpress.com/about-contact/

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