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

The general approach to handle difficult behaviour, discussed here, is applicable for any difficult behaviour. This approach, combined with appropriate communication and assistance, can reduce the agitation and withdrawal of dementia patients. Caregivers can also better cope with accusations and blame that arise from the patient’s paranoia, delusions, and hallucinations. On this page, we target some special behaviour challenges faced, and suggest things caregivers can consider for coping. The difficult behaviours listed here are, of course, not comprehensive. Some books/ resources that can help you understand a wider range of behaviours are included on this page.

Some common difficult behaviours of dementia patients are wandering, incontinence, repetitions, sundowning

What caregivers can do: Understand typical triggers for such behaviours. 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, try out changes, and refine as needed.

An important thing to remember is: What we see as “difficult” behaviour is the patient’s response to a situation, given her needs and abilities. We are more likely to resolve such behaviour if we think of it as a communication we have not understood. We have to try to understand the problem/ need, and resolve it in ways that are effective for the patient. Every patient is different and has different needs and ways to respond; this page provides pointers to start examining what may help. A very good way to get more pointers and creative solutions is to attend support group meetings or browse online forums, where people facing similar challenges share both problems and solutions.

(We must also remember that overall improvements obtainend by generalized approaches (home adaptations, better communication, effective ways to help patients in daily tasks, introduction of meaningful and fulfiling activities, etc.), can reduce the chances of worrisome behaviours.)

Note:  The first thing to check in any such situation is a possible medical cause. Medical causes are not a focus of the discussion here. Also, the methods discussed here do not include medication. This page focuses on non-pharmacologic approaches. If the patient’s behaviour is unmanageable/ harmful, please consult your doctor.

The common difficult behaviours discussed on this page are:

Wandering

Dementia patients are prone to wander for multiple reasons, including disorientation about time and place, restlessness, the need to go somewhere to meet someone or avoid someone, need to resolve pain or physical discomfort, need to use the bathroom, stress, or just distraction. For example, they may not remember where they are, and they want to go home, and do not understand that they are already at home. Or they have forgotten that they have retired, and want to go to their old workplace (office/ factory/ shop) and therefore leave the house, not realizing they are in a different city. Or they are restless and want to take a walk, but they 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.

As caregivers, this wandering tendency of patients poses a special problem as patients seem to slip out of the house the moment the caregiver sits down for rest, or if someone leaves the door open. Keeping a constant watch gets very difficult. And when the patient wanders off, the family is totally flustered, not knowing where to look or what to do, as they rush around asking everyone. Since awareness of dementia is poor, the local policemen may 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 anticipate this possibility and reduce the chances of such wandering, being alert about when the patient seems restless enough (which indicates he/ she may wander off), as well as be 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 the material in these fact-sheets: Wandering topicsheet and Wandering Behavior: preparing and preventing. Note that these documents are written for other countries, and some of the solutions given in them may not directly apply in India (more on this later in this section).

Understanding the reasons our dementia patient may wander: Every patient is different. By understanding wandering in general, we can apply that to our own knowledge of the patient and our observations, 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 going-to-office time? 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 we know the patient’s likes and dislikes, we 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 often confusing voices on TV with those of real persons? Has the patient always tended to walk out of the house after an argument or when frustrated?

Some wandering patterns we see are related to what their life consisted of before their dementia started. 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.

Making changes in the environment to reduce triggers. An understanding of what may cause wandering can be used to change the things at home, and our behaviour, so that the chances of triggers reduce.

Some changes are helpful for most dementia patients, like changes that reduce the chance of confusion. Reducing clutter and noise, having more light, using signs for the toilet, removing mirrors, removing the TV (or keeping the volume low). In addition, we can try to reduce triggers specific to the patient. For example, if the patient is used to picking up a purse before going out, we can remove that purse so that the patient feels she cannot go out because her purse is not there. Or if the patient gets perturbed by the phone, we can change the ring tone to something the patient does not associate with a phone call. If we know the patient gets restless at eight in the morning, we can arrange for enough distracting company at that time or even remove the clock or place it at a less prominent location.

Depending on the patient’s reasons for wandering, 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 not prominent. Or it may help to clearly label the door with a “Stop” sign. Some people find it effective to place a mirror on the door, so that the patient approaching it feels someone is standing there, and turns back. The choice of what changes to make depends on what would work for the patient.

Using reality orientation (to the extent the patient appreciates it, and not if it agitates the patient) is another tool to reduce the triggers for wandering. 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.

Remaining 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. Noticing this restlessness and acting in time can reduce the possibility of wandering. Watching body language helps. For example, a squirming may indicate that the patient wants to go to the toilet, and if she is led to the toilet at that time, she will not need to wander. If the patient is restless or disoriented, the chances of wandering increase.

Some situations are likely to cause wandering as the patient gets disoriented.  Any change from the normal routine can disorient the patient and increase the chances of wandering. An outing is one such instance. When in a crowd, or even in an unfamiliar park (and to a dementia patient, any place can become unfamiliar), 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 dementia patient may not remember what was said, and get alarmed and start walking to search for someone familiar, ending up getting lost. Expecting a patient to remember assurances and remain oriented when in unfamiliar surroundings is often unrealistic.

It is also helpful to inform neighbours, apartment complex security guards, and the neighbourhood shopkeepers about the problem and clearly tell them what they must do if they see the patient wander off. Unfortunately in India, people often hesitate to stop an elder doing something because it is considered disrespectful, and 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; the danger of wandering has to be explained so that people understand and believe, and will cooperate.

Getting them back home if they wander: In spite of the best of efforts, the patient may wander. Families need to be prepared for this. They need to keep at hand the numbers of friends and well-wishers who can help immediately. 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.

One thing that helps is making sure the patient always carries some identification. The patient may not agree to carry a wallet, or to pin a name tag, but you can make sure that his/ her pocket always has a slip of paper with your name and phone number. Stitch a name tag on the back of the nightgown, at a place the patient does not tear it off, but which will be clearly visible to anyone who sees her walking around, looking confused.

Some countries have systems like bracelets and GPS tracking. Bracelets are useful only in places where people are aware that patients could be wearing such bracelets, but in places where bracelets could be mistaken as jewellery, no one may think of checking a bracelet for a phone number. GPS tracking, too, has not taken off fully in India. Giving a dementia patient a phone that can be used for tracking may not be effective

In many countries, the police is very alert about wandering patients, and swings into action immediately, launching a massive search. That is unrealistic to expect in India, given our stretched resources. However, informing the police is useful as someone noticing a confused, wandering elder may leave them at the nearest police station. If the police station is alerted about the missing patient, they will be able to contact you and tell 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 exhibiting some degree of incontinence, urinary or bowel, and this increases the caregiver’s work a lot, and can also be awkward and difficult to handle. Reasons for incontinence could be the dementia confusion and growing inability, but there are also often medical reasons for incontinence which may get overlooked as the patient does not explain the problem or complain. Urinary incontinence is more common in the beginning.

Urinary incontinence is of three broad categories: stress (where urine leaks when a person laughs, sneezes, or moves in ways that squeeze the bladder), urge incontinence (where patients cannot hold back the urge till they reach the bathroom), and overflow incontinence (where 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. Unfortunately, many dementia patients may not be able to use techniques like Kegel’s exercises because they are not able to understand them or they do not see why they should do such exercises.

Dementia patients may also be unable to understand the urge and know that they are supposed to go to the bathroom for it.  They may register the urge too late to reach the toilet in time. Or 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.

Getting a medical consultation on possible causes of incontinence is a good starting point, and often missed out by caregivers who may assume the patient is acting stubborn or uncooperative. Patients often do not understand what has gone wrong when they soil themselves, which sometimes leads to arguments.

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

  • Having enough light on the path to the toilet, labelling the door, simplifying the toilet and adding grab rails on the way.
  • Using a toilet seat that is stable and easy to sit on, possibly with some grab rails to hold while sitting and to get up easily
  • Using clothes that are easy to remove in a hurry
  • Checking the liquid intake and adjusting the timing so that the need to go to the bathroom at night (when confusion is high and others may not be awake) is minimized
  • Tuning the input of drinks like coffee which may increase the problems of incontinence. These differ across patients, too
  • Taking the patient to the toilet at regular intervals to reduce the probability of soiling. Make this a calm, natural activity
  • Observing the patient’s body language for signs of discomfort that may indicate that he/ she has a full bladder and needs to “go”
  • For the night, if the patient seems 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 (available in baby shops) under the covers on chairs and sofas. 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 find it very upsetting when patients soil themselves. Patients can be uncooperative and refuse to take off the soiled clothes, insisting nothing is soiled. It is unrealistic and unproductive to try and convince the patient that he/ she has soiled himself; the simplest way is to remain calm and use some other reason to make them change. Suggest new clothes because it is evening, or use some other reason. Or point to some ink spot and say that needs cleaning. It is possible that the patient feels something is wrong, and is ashamed or bewildered by what has happened, but it is also possible that the patient has no idea what happened. Most patients deny that they have been incontinent.

The focus of caregivers is not to convince the patient that they have soiled themselves, but to see how they can reduce such accidents in future and also keep the patient from getting agitated (which only makes things worse and increases the chance of more accidents). By acting reassuring and normal, caregivers can diffuse the situation and prevent more agitation. It is for the caregivers to think of creative ways to reduce the problem, and to accept that accidents will happen. 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.

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 are also able to communicate this more easily. Even so, accidents will happen. Be 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.

A reference for incontinence in dementia patients is available here.

Also, 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 behaviour

Repetitive behaviour is very common in dementia patients. Sometimes it takes the form of the patient repeatedly asking the same question or saying the same thing; at other times, the patient may perform the same action (like washing hands, or going to the toilet) again and again, or demand food just after having eaten.

Repetitive behaviour could be occurring because of several reasons, such as:

  • The patient forgets that she has asked the question before/ done the action just a few minutes ago
  • The patient has a need that was not met by the answer/ 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/ 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, and sometimes they snap back, which only makes matters worse as the patient now 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
  • Check if the patient is actually concerned about something different from what she is asking, and answer that question
  • The patient may just want company, and can only think of getting it by asking questions as an attention-seeking method
  • If the patient seems to be in a loop, and repeating the question out of habit, try distracting or remaining 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, or her more polite way of telling you that she is hungry, or just her way of 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, or you can, in turn, ask her whether she has eaten, which 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 something, or keeping on doing an action after it is complete) are more common in some dementias, and sometimes they can also be caused by some medications. Reviewing the current prescription is suggested.

Repetitive actions could include things like 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 he/ she does not remember the way to the bathroom, and is worried that there will be no one to take him/ her to the bathroom when the need arises
  • Patients may repeat an action because they are stuck on it mentally, and distraction will work.

To the extent they can, caregivers need to find out the reason by observing body language and using their understanding of the patient and situation. Then they can use whatever is suitable, 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 behaviour, it helps to understand the triggers. Observing when such behaviour 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 behaviours.

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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 awake and alert because the patient is awake and may harm herself. While the patient may sleep off during the day, the caregivers cannot do so as they have jobs to do.

Many dementia patients show sundowning. While the reasons are not known, some techniques suggested to 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, making it more difficult to rest at night
  • If the patient tends to be restless at night because she needs to repeatedly visit the bathroom, do not serve liquids in the evening and night to reduce this need
  • Stick to a routine that encourages staying awake in the day, making sure the day is active but not exhausting
  • Exposure to bright sunlight during the day may help reset the day-night body cycle
  • If you are planning an outing, keep it for the earlier part of the day so that the patient can wind down by night and is not overexcited or exhausted
  • Re-examine the night meal and see if that 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 is prone to wander at night, be especially careful to make the house safe by removing objects that can be tripped over, or break, or otherwise harm or frighten the patient

Families get very tired when patients exhibit sundowning. Part of the reason is that they need to remain alert. See if you can use systems like alarms to be warned if the patient is getting out of bed. Take turns within the family to do the “night shift” vigilance, so that the rest of the family can rest. Sundowning behaviour, pacing and agitation at night, are particularly high in some forms of dementia. If the agitation is very high and could be harmful to the patient, doctors may be able to 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 behaviour 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.

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Links for some other unusual/ challenging behaviors

Some other behaviors that require coping skills include aggression and hallucinations, etc. Below are some reference links for a range of such behaviors. Note that the references are written for the UK and may not be fully relevant/ applicable in India, but they could still provide points to consider. Also, see the “See Also” link below for links to interviews, articles, and books that may help.

  • Unusual behaviour: This page discusses topics like shouting and screaming, lack of inhibition, trailing and checking, hiding and losing things, suspicion, etc., and suggests tips for coping with these.
  • Dementia and aggressive behaviour: This page discusses aggressive behavior, its causes such as biological causes, social causes, and psychological causes, and offers tips for reacting during the behavior and afterwards. It also has tips and approaches for preventing and managing such behavior.
  • Sight, perception and hallucinations in dementia: This page discusses vision and perception related issues faced by persons with dementia, and how to support patients. It also discusses various types of hallucinations that persons with dementia may face, and ways to cope/ support, and possible treatments.

A set of downloadable documents discussing various behaviors of concern is also available from the website of National Institute of Aging, ADEAR, at this link.. 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 behaviour. 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, click here

While this page discusses some specific behaviour 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 behaviour”, explains possible causes, and gives several practical tips for both preventing and handling the behaviour.

This book is an excellent day-to-day reference to have. Read about the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, view the title on Amazon.in or any other vendor.

36 hr bookThe 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 behavioural 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. Check out the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, view the title on Amazon.in or Flipkart or any other vendor.

This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: 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 behaviour in dementia and how to adjust to it and respond positively. Read about the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, view the title on Amazon.in or Flipkart or any other vendor.

This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: Amazon.com.

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 July, 2014]

City/ region wise resources

City/ region-wise resources for dementia care: Bangalore, Mysore,   Chennai, Coimbatore,   Guwahati,   Hyderabad,   Kolkata,   Manipur,   Pune,   Delhi,   Goa,   Kerala cities,   Mumbai,   Others Also: Resources across India and Informational websites.

Extensive blog on dementia care

Swapna writes blog Swapna Kishore writes about her personal experiences of caring for her mother, and also shares observations as a resource person for dementia care in her blog here.