Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning

Changed behaviors are common in dementia, and some of these are worrying because they can harm the patient or others. Some common difficult behaviors seen are wandering, incontinence, repetitions, and sundowning.

What caregivers can do: Understand typical triggers for such behaviors. Observe the patient for possible causes. Evaluate special tips suggested on this page, available in books, and in support groups. Decide on a suitable approach and try out changes. Keep observing what happens and adjust the approach as needed.

Changed behavior is the patient’s response to a situation, given her needs and abilities, and the surroundings. You can consider the behavior as a communication and try to understand it. Once you understand what is causing the behavior, you can find creative ways to cope. The earlier page, Handling Behaviour Challenges, discussed a general approach for analyzing and coping with changed behavior. This page discusses some specific worrying behaviors that are common in patients.

Note:  This page discusses only non-medicine approaches for behavior. If the patient’s behavior is harmful and cannot be managed, please consult your doctor.

Wandering

Dementia patients may wander for many reasons. Examples are disorientation about time and place, restlessness, wanting to go somewhere, trying to resolve pain or physical discomfort, need to use the bathroom, stress, or just distraction. They may not remember where they are; they want to go home and do not understand that they are already at home. They may forget that they have retired, and so they want to take the bus and go to work, not even realizing they are in a different city. Or they go out for a walk but cannot remember their name and address once they are outside. Whatever the reason, wandering is a very common problem. Some estimates state that six in ten Alzheimer’s patients will wander.

Wandering poses a special problem for families because patients slip out as soon as the caregiver sits down for rest, or if someone leaves the door open. Keeping a constant watch is very difficult. When the patient wanders off, the family doesn’t know where to look or what to do, as they rush around asking everyone. In India, local policemen often do not realize how serious the problem is. They may just ask the family to wait for a few hours for the person to return.

Given how common wandering is, caregivers need to reduce the chances of wandering by being alert about when the patient may wander and also being ready to quickly locate the missing patient in case he/ she wanders.

Many cases of wandering reported in India involve a family travelling in a train, where the patient gets off the train at some station at night while the family is sleeping. If you are travelling with a dementia patient, be especially alert about this possibility.

General understanding of reasons why people wander: To understand possible reasons for wandering, check out these fact-sheets: Wandering topic sheet (PDF file) and Wandering Behavior: preparing and preventing. Note that these documents are written for other countries, and some solutions in them may not apply in India (more on this later in this section).

Understand the reasons the dementia patient may wander: Every patient is different. Understand in general why patients may wander. Then combine that with your own knowledge of the patient and your observations and to see when the patient is more likely to wander. For example, does the patient get restless when he hears a train? Or when it is time to go to office? Does the patient try to open the door if the bell rings? Does the patient confuse the sound of the ringing phone with the sound of the doorbell? Does the patient keep forgetting where the bathroom is, and therefore walk towards the apartment door instead?

Patients often wander because of unmet needs. As you know the patient’s likes and dislikes, you may be able to understand these. Is it the need to go to the bathroom, the need to meet someone, to buy something, to “return home”? Or looking for something lost. Could the patient be reacting to feeling too hot, too cold, feeling the clothes are too tight? What makes the patient feel more confused about the time and place? Is the patient confusing voices on TV with those of real persons? Has the patient always walked out of the house after an argument or when frustrated?

Wandering patterns can usually be connected to the patient’s personality and their earlier life habits and needs. A man may think he has to go to office when he sees that it is eight o’clock in the morning. The call of a vegetable vendor outside makes a housewife with dementia rush out to buy tomatoes. The patient may get frightened by phone calls because when he was younger, people called only for emergencies.

Make changes in the environment to reduce triggers. Use an understanding of the possible cause of wandering to change the things at home and the interactions. This will reduce the chances of wandering.

Reducing confusion is helpful for most dementia patients. Reduce clutter, have more light in the rooms, use signs for the toilet. If mirrors confuse the patient, remove or cover them. If TV programs disorient the patient, remove the TV or lower the volume.

Look for other triggers and habits and see what may help. If the patient is used to picking up a purse before going out, remove the purse so that the patient feels she cannot go out because her purse is not there. If the patient gets disturbed by the phone, change the ring tone to something the patient does not recognize as a phone ringing. If the patient gets restless at eight in the morning because that was the time she used to go to office, distract her at that time, or remove the clock or place it at a less prominent location.

The patient may be wandering just because she sees a door and so she opens it. It may help to put a curtain to hide the door, or paint the door the same colour as the wall so that it is less visible. It may even help to put a “Stop” sign on the door. Some families find it useful to place a mirror on the door; the patient sees her reflection, feels someone is standing there and turns back.

Reality orientation can also be considered. This may work for some patients, but may agitate others, so check suitability for your situation. Reality orientation is discussed on: Plan care for various stages of dementia, Adapt the home for dementia patients, and Improving the patient’s quality of life.

While looking at how to change environments, be careful to consider how the patient would respond to the change. What works for one person may not work for another.

Remain alert to wandering. Often, patients show some restlessness before they wander off. They may look around them, fidget a bit, get up and pace the room. Notice this restlessness and acting in time to reduce the possibility of wandering. Watching body language helps. For example, a squirming may indicate that the patient wants to go to the toilet; if she is led to the toilet at that time, she will not need to wander.

Some situations are more likely to cause wandering because they disorient the patient.  Any change from the normal routine increases the chances of wandering. An outing is one such instance. When in a crowd, or even in an unfamiliar park the patient is likely to wander off if left alone for even a minute. A caregiver may tell the patient to stay still and assure her that he will be back in a minute, but the patient may forget that and get alarmed and start walking to search for someone familiar. Expecting a patient to remember assurances and feel comfortable in unfamiliar surroundings is unrealistic.

Inform neighbours, apartment complex security guards, and the nearby shopkeepers about the problem and tell them what they must do if they see the patient wander off. Unfortunately in India, people hesitate to stop an elder because it is considered disrespectful. They will say, what could I do, your mother said she had to go, so how could I stop her? Merely telling people is therefore not enough; you will have to explain the danger of wandering well enough for them to believe and cooperate.

Get them back home if they wander: In spite of the best of efforts of families, patients wander. Families need to be prepared for this. They should keep at hand the numbers of friends and well-wishers. Copies of recent photographs of the patient and descriptions (height, weight, other characteristics) should be kept ready for quick circulation. Family and others should begin the search immediately, and the police should also be informed.

Try to ensure the patient always carries some identification. The patient may not agree to carry a wallet, or to pin a name tag, but you can put a slip of paper with your name and phone number in a pocket of the patient’s clothes. Stitch a name tag on the back of the nightgown or kurta at a place the patient does not tear it off, but which will be visible to anyone who sees her walking around.

Some countries have systems like bracelets and GPS tracking. Bracelets are useful only if people know that patients could be wearing such bracelets. In places where bracelets could be mistaken for jewelry, no one may check a bracelet for a phone number. GPS tracking has not taken off fully in India. Giving a dementia patient a GPS phone may not be effective.

In many countries, the police swings into action as soon as notified about a wandering patient. This is not true in India. However, even in India, it helps to tell the police because someone who notices a confused and wandering elder may bring them to the nearest police station. If the police station knows about the missing patient, they will contact you.

An India-based blog entry describing some real-life wandering cases and offering suggestions that are applicable in India is available here: Where is Mother, or, when a dementia patient walks out. Some tips on how to search for the missing person are included here: Tips for searching for a missing person with dementia.

Alzheimer’s Association, UK, also has some discussions on this topic (some of their suggestions may not be applicable in India). See the page: Walking about for possible reasons for walking about/ wandering and how to cope with such behavior. Also, see the discussion on restlessness/ pacing on this page: Unusual behaviour.

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Incontinence

As dementia progresses, patients start showing some incontinence, urinary or bowel. This increases the caregiver’s work a lot, and can be awkward and difficult to handle. In the beginning, urinary incontinence is more common than bowel incontinence.

Urinary incontinence is of three broad categories. Stress incontinence is whenurine leaks when a person laughs, sneezes, or moves in ways that squeeze the bladder. Urge incontinence is where patients cannot hold back the urge till they reach the bathroom. Overflow incontinence is when small amounts keep leaking. Causes include urinary tract infections, constipation, weak pelvic muscles, and enlarged prostate. Some medications, such as some sedatives, can reduce the sensitivity to bladder signals. Some medications increase the frequency of urination. Understanding enough about the incontinence may lead to some solutions. Many persons with incontinence manage their problem by using pelvic exercises like Kegel’s exercises. Unfortunately, many dementia patients may not be able to use such techniques because they are not able to understand them, do not think they need them, or just forget to do them.

Getting a medical consultation on possible causes of incontinence is a good starting point. It is often missed out by caregivers who may think the patient is acting stubborn or uncooperative. Patients do not tell when they are in pain or unwell, so medical reasons of changed behavior are often missed.

There are also many other reasons for incontinence in dementia patients. They may be unable to recognize the urge or know that they need to go to the bathroom for it. They may register the urge too late to reach the toilet in time. They may be scared to walk to the toilet. Or they may not remember where the toilet is, or how to use the toilet once they are taken there. They may be confused or even frightened by the fixtures in the bathroom, and find it frightening to sit on the seat. The clothes they wear may be too complicated to take off in time.

In addition to whatever medical approaches can do, here are some aspects to check for:

  • Have enough light on the path to the toilet, label the door, simplify the toilet, and add grab rails on the way.
  • Use a toilet seat that is stable and easy to sit on, possibly with grab rails to hold while sitting and while getting up.
  • Use clothes that are easy to remove in a hurry.
  • Check the liquid intake and adjust the timing to reduce the need to go to the bathroom at night. Confusion is highest at night and caregivers may not be awake to help.
  • Reduce or stop drinks that may increase incontinence. These may differ across patients, but coffee is one example.
  • Take the patient to the toilet at regular intervals to reduce the probability of soiling. Make this a calm, natural activity.
  • Observe the patient’s body language for signs of discomfort that may indicate a full bladder.
  • For the night, if the patient is able to use it, keep a commode chair near the bed.

Some soiling is likely to happen whatever you do. Adjust your home to minimize the problems it causes. For example, remove carpets that could become unusable after they are soiled. Use water-proof sheets under the covers on chairs and sofas; these are easily available in baby shops. Use plastic sheets on the bed, under the cotton sheet. Wrap mattresses and cushions in plastic so that the urine does not soak through to the foam/ cotton inside, and hygiene can be maintained.

Often, caregivers get very upset when patients soil themselves. They start telling the patient that she had soiled herself and show annoyance and ask the patient to change. Sometimes the patient may sense something is wrong, and feel ashamed, but it is also possible that the patient has no idea what happened. Patients often refuse to believe they have soiled themselves. This leads to arguments, agitation, and even more problems. Patients can be uncooperative and refuse to take off the soiled clothes. Everyone gets upset and frustrated.

The simplest and fastest way to handle soiling is to remain calm and give the patient some other reason to make them change. For example, suggest new clothes because it is evening. Or point to some turmeric stain or ink-spot and say that needs cleaning. Don’t start scolding the patient or arguing. Even if the patient herself says she has had an accident, act reassuring and normal to diffuse the situation and prevent agitation. Just do the necessary cleaning. For hygiene, use disposable gloves while cleaning. To reduce the unpleasantness, consider using face masks while cleaning, and use air fresheners to remove the odour.

Caregivers can then focus on how to reduce such accidents in future. It is for the caregivers to think of creative ways to reduce the problem, and to accept that accidents will happen.

Bowel incontinence is more difficult to handle, but is also rarer. It is easier to be alert on the patient’s need to pass motion, and patients usually communicate this more easily. Even so, accidents will happen. Be especially alert after meal-times, when the bowels are likely to move, and also track when the patient last passed motion to anticipate when the patient may next need to go. Check for constipation, and consult the doctor for tips on dietary fibre and stool softeners. Exercise helps reduce the chance of constipation.

Caregivers also need to ensure hygiene by washing and drying the patient. Soiled clothes need to be disinfected and washed.

Use of incontinence pads and panties can reduce soiling. These are expensive but effective. Some patients wear them without fussing, but others refuse, even taking them off and flinging them across the room. It may be easier to make them wear incontinence underwear (which looks similar to normal panties) rather than bulky diapers.

Also, check a discussion for incontinence in dementia patients (Alzheimer’s Australia_. See this page from Alzheimer’s Association UK Managing toilet problems and incontinence — the page discusses incontinence and suggests tips for coping (some suggestions may not be practical in the Indian context).

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Repetitive behavior

Repetitive behavior is very common in dementia patients. Patients may repeatedly ask the same question or say the same thing. They may perform the same action again and again, like washing hands, or going to the toilet. They may demand food just after having eaten.

Repetitive behavior could happen because of many reasons, such as:

  • The patient forgets that she has asked the question before, or cone that action just a few minutes ago.
  • The patient has a need that was not met by the answer or by doing the action.
  • The patient has gone in a “loop” and is unable to break out of it.
  • The repetition is an expression of some other emotion or need that the patient is unable to express directly.
  • Something in the surroundings is disorienting or frightening the patient.
  • Some medication is causing repetitive movements.

Family members often get irritated or feel helpless when the patient keeps repeating the same question. They may snap back and this makes matters worse as the patient gets agitated. Here are some things to try:

  • Repeat the answer more slowly, using brief, simple sentences, and in a reassuring and calm way.
  • Add gestures, or use a slightly different way of answering.
  • If the patient seems disturbed, address the emotion directly, and be reassuring. Use “validation” of the emotion and address the underlying concern (Some links at the bottom of the page provide more discussion on the validation technique).
  • Check if the patient is actually concerned about something different from what she is asking, and answer that question<./li>
  • The patient may just want company, and can only think of getting it by asking questions as an attention-seeking method. Sit with the patient and give them company.
  • If the patient seems to be in a loop, and repeating the question out of habit, try distracting or remaining respectfully silent to break the loop.

For example, a patient could be asking repeatedly which date it is, not to know the date, but because she expects to be taken for an outing on that date, so the caregiver must answer that worry of the patient. For example, the caregiver may say:  Today is Monday. We will go to the park tomorrow, Tuesday. It will be great fun.

A common repetition is when the patient keeps asking family members whether they have eaten their meal. This could just be the patient expressing love and concern. It could be her polite way of telling you that she is hungry. Maybe she is acting as a hostess or making polite social talk. Sometimes a visible gesture, like pointing to an empty plate, can convince her that you have eaten. You can also ask her whether she has eaten–this completes the social ritual and makes her stop asking the question. Every family has to find its way to handle such situations, but it helps to remember that the patient is not doing this to intrude or annoy, and to remain patient.

Patients also sometimes repeat an action. Some forms of repetitive actions, such as repeatedly tapping or keeping on doing something after it is complete,are more common in some dementias. Repetitive actions can also be caused by some medications. Discuss with the doctor and ask for a review of the current prescription.

One common repetitive action is insisting on being taken to the bathroom repeatedly. Again, there could be many reasons. For example:

  • The patient may be suffering from constipation.
  • Perhaps the patient wants to be taken to the living room and not the bathroom, and is just using the wrong word.
  • Maybe the patient is anxious because she does not remember the way to the bathroom. She is worried that there will be no one to take her to the bathroom when the need arises.
  • Patients may repeat this request because they are stuck on it mentally. In such a case, distraction will work.

Caregivers need to observe body language and use their knowledge and understanding of the patient and situation. Then they can decide how to cope depending on what is suitable. There are many techniques available, such as emotional validation, physical help, reassurance, distraction. For example, giving the patient something to hold or do may distract the patient enough to stop the repetition.

As in any challenging behavior, it helps to understand the triggers. Observing when such behavior happens can help the caregivers understand what may be causing it, and change that.

Also, see this page from Alzheimer’s Association UK Unusual behaviour — the page includes a discussion on repetitive behavior and other unusual behaviors.

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Sleeplessness and Sundowning

Sundowning refers to the situation when a dementia patient starts showing confusion and sleeplessness as evening sets in, and stays awake, restless, and disoriented at night. This gets very tiring for caregivers who need to remain alert at night because of the patient. While the patient may sleep off during the day, the caregivers cannot do so.

Many dementia patients show sundowning. While the reasons are not known, some techniques sto reduce this are:

  • Check for medical causes and discomfort that could be causing problems.
  • Check whether something is tiring or over-exciting the patient during the day. This may be making it more difficult for them to rest at night.
  • If the patient is restless at night because she needs to repeatedly visit the bathroom, do not serve liquids in the evening and night.
  • Stick to a routine that encourages staying awake in the day. Make sure the day is active but not exhausting.
  • Exposure to bright sunlight during the day may help reset the day-night body cycle.
  • When planning an outing, keep it for the earlier part of the day. This will make sure that the patient is able to wind down by night and is not overexcited or exhausted.
  • Check to see if the night meal could be causing discomfort.
  • Reassurances may calm down the patient.
  • Use better lighting to reduce the chances of the patient frightening herself at night. A night light may help, as it will reduce the agitation of waking up in unfamiliar surroundings.
  • If the patient tends to wander at night, make the house safe. Remove objects that can be tripped over, or which can harm or frighten the patient.

To reduce the fatigue of always staying alert, families can use systems like alarms to be warned if the patient is getting out of bed. Take turns within the family for the “night shift” so that the rest of the family can rest. Sundowning behavior and pacing and agitation at night, are particularly high in some forms of dementia. If the agitation is very high and could harm the patient, doctors may prescribe some medication.

Also, see this page from Alzheimer’s Association UK Unusual behaviour; this page discusses restlessness/ pacing, night-time walking, sleeplessness and sundowning, and other such behavior and suggests tips for coping with these (some suggestions may not be useful in the Indian context).

Another discussion is available here (from National Institute of Aging, ADEAR:Sundowning (PDF file).

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Links for some other unusual and challenging behaviors

There are many other behaviors that you may need to find ways to cope with. This section has some links for such behaviors. These have been prepared for the UK. They give a good overview, but the suggestions will need to be adapted to use in India. The “See Also” section below has more links to useful interviews, articles, and books.

A set of downloadable documents discussing various behaviors of concern is also available from: the website of National Institute of Aging, ADEAR. Downloads include documents on: Coping with Agitation and Aggression, Hallucinations, Delusions, and Paranoia, Managing Personality and Behavior Changes, Rummaging and Hiding Things, and Sundowning

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See also…

A relevant interview on this site:

Caregiver resources in India and Other dementia/ caregiving resources: Almost all these sites/ resources contain tools and tips for handling difficult behavior. Many sites have downloadable files with information. The following are particularly helpful:

Also, consider attending support group meetings of your local ARDSI chapter or any other local body. Online communities are also helpful. For example, Alzheimer’s Association has a community you can join.

While this page discusses some specific behavior challenges, caregivers face a much wider range of dementia behavior challenges. The general approach suggested on the other page (Handling Behaviour Challenges) may be helpful. Also, consider reading at least some of the following books, which have explanations and tips for several behaviors. Of course, a lot of things are culture and context dependent, so some degree of “tuning” and creativity will be required to adapt the suggested tips to a situation, but these books contain fairly detailed explanations for a range of behaviors.

difficult behaviour book
Understanding Difficult Behaviors: Some practical suggestions for coping with Alzheimer's disease and related illnesses (Anne Robinson, Beth Spencer, Laurie White): This book looks at each 'difficult behavior', explains possible causes, and gives several practical tips for both preventing and handling the behavior.

This book is an excellent day-to-day reference to have. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or any other vendor.

36 hr book cover and link
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (Nancy L Mace, Peter V Rabins): This book explains a variety of behavioral symptoms and how to cope with them. It can form a very good starting point for caregivers looking for ways to understand and cope with changes that dementia brings. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it at Amazon.com or Amazon.in.

howard book
Alzheimer's: A Caregiver's Guide and Sourcebook, 3rd Edition (Howard Gruetzner): This book includes discussions that can help caregivers understand changed behavior in dementia and how to adjust to it and respond positively. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.

This book is also available as a Kindle eBook. Read the book or sample right away on your laptop, tablet, or Kindle by checking it at Amazon.com or Amazon.in.

You can also see our full books/ DVD suggestions at: Books and DVDs, or surf Amazon.com or Amazon.in for your specific needs.

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[This page was last updated in June, 2015]