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

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

What caregivers can do: Understand typical triggers for such behaviors. Observe the person with dementia to understand 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.

The behavior of a person with dementia depends on the state of dementia, on what is happening, on the person’s needs, surroundings, and other factors. You can use changed behavior to understand the person’s situation, abilities, and needs. Based on this understanding, you can find creative ways to cope. The previous page, Handling Behavior Challenges, discussed a general approach for changed behavior. This page discusses some specific worrying behaviors seen in many persons with dementia.

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

Sections on this page:

Wandering.

Persons with dementia may wander for many reasons. Examples are confusion, restlessness, desire to go somewhere, pain or discomfort, need to use the bathroom, stress, and distraction. They may not remember where they are. They want to go home and do not know that they are already at home. They forget that they have retired, and want to take the bus and go to office. They go out for a walk but cannot remember the way back. Whatever the reason, wandering is a very common problem in dementia. Some estimates say that six in ten Alzheimer’s patients will wander.

Wandering is a major problem for families. Persons with dementia may leave the home if someone leaves the door open. Staying alert and careful all the time is very difficult. When someone does not return home, the family doesn’t know where to look or what to do. In India, the police may not realize how serious the problem is. They may ask the family to wait for a few hours for the person to return. They may not be able to search much.

Given how common wandering is, you need to remain alert to stop the person from wandering. You also have to be ready to quickly locate the missing person.

Many wandering cases happen when a family is on a train. The person gets off the train at some station at night while the family is sleeping. If you are travelling with someone who has dementia, be careful about this. Getting lost is also common when in an unfamiliar place or a crowded place, like a temple or market or mela. Or when traveling on a bus, etc.

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

Persons with dementia often wander because of unmet needs. As you know the person’s likes and dislikes, you may be able to understand these. Is it the need to go to the bathroom? Is it the need to meet someone, to buy something, or to “return home” to a childhood home? Could the person be restless and reacting to feeling too hot or cold, or feeling the clothes are too tight? When does the person feel more confused about the time and place? Is the person confusing voices on TV with those of real persons? Has the person always walked out of the house after an argument or when frustrated? Is it just physical discomfort, like constipation? Or restlessness caused because of “separation anxiety” from someone? Night restlessness (called sundowning, and discussed below in another section) can also increase the chances of wandering.

Wandering patterns are connected to the person’s personality and earlier life habits and needs. A man may think he has to go to office every morning at eight o’clock. The call of a vegetable vendor outside makes a housewife with dementia rush out to buy tomatoes. The person may get frightened when the phone rings because when the person was younger, a phone call meant there was an emergency.

Change the environment to reduce triggers. Use an understanding of the possible cause of wandering to change the things at home. Make suitable changes in the interactions that may trigger the possibility of the person leaving home and getting lost. These will reduce the chances of wandering.

Reduce things that confuse the person with dementia. Reduce clutter in the rooms. Have more light in the rooms. Use signs for the toilet. If mirrors confuse the person, remove or cover them. If TV programs disorient the person, remove the TV or lower the sound volume. If the person keeps saying she wants to go home, see if putting up childhood photos and old, familiar objects in the room will help convince the person she is already at home.

Look for other triggers and habits and make changes. If the person always picks up her purse before going out, remove the purse. The person will keep looking for the purse and may forget to go out. If the person gets disturbed by the phone, change the ring tone to something the person does not recognize as a phone ringing. If the person wants to go to office every morning at eight, distract her at that time, or remove the clock she might see.

The person with dementia may go out just because she sees a door and opens it. Put a curtain to hide the door, or paint the door the same color 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 person sees her reflection, feels someone is standing there, and turns back.

Consider reality orientation if suitable. This works for some persons with dementia, but may agitate others. Reality orientation, home adaptations, and the related care aspects are discussed in detail on other pages listed at the bottom of this section.

While looking at how to change environments, consider how the person with dementia might respond to the change. What works for one person may not work for another.

Remain alert to initial signs of wandering. Often, persons with dementia show some restlessness before they wander off. They may look around, fidget, get up and pace the room. Notice this restlessness. Watch the body language. Then see if some action can help the person meet the need without risking gettinglost. For example, squirming may indicate that the person wants to go to the toilet. If she is taken to the toilet, her need will be met and she may not keep looking around and get lost.

Any change from the normal routine may increase disorientation and therefore increase the chance of wandering. An outing is one example. When in a crowd or in an unfamiliar place the person may walk around to see things or locate you, and lose her way if left alone for even a minute. You may tell the person to stay still and say you will be back in a minute. But the person may forget that, feel alarmed and start walking to find something familiar. It is unrealistic to expect a person with dementia to remember assurances and feel comfortable in unfamiliar place.

Inform neighbors, apartment complex security guards, and the nearby shopkeepers about the problem. Tell them what they must do if they see the person wandering off. Unfortunately in India, stopping an elder is often considered disrespectful. Neighbors may tell you, what could I do, your mother said she had to go. How could I stop her? Merely telling friends and neighbors to be alert is not enough. You will have to explain the danger of the person getting lost clearly so that they believe you and stay alert.

Get them back home if they wander: In spite of the best of efforts of families, persons with dementia do walk off and get lost. Be prepared for this. Keep the numbers of friends and well-wishers handy. Keep recent photographs of the person and descriptions (height, weight, other characteristics) with you. This will help you make copies and circulate information quickly in case of wandering. If the person wanders, begin the search immediately with the help of family and friends. Inform the police.

Try to ensure the person always carries some identification. The person 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 person’s clothes. Stitch a name tag on the back of the nightgown or kurta. It should be at a place the person does not tear it off, but which is visible to anyone who sees her walking around.

Some countries have bracelets and GPS tracking. Bracelets are useful only if the public knows that persons 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 is not yet stable and reliable in India. Also, person may not carry a GPS phone or may lose it, or someone may snatch it away.

In many countries, the police begins searching as soon as they are told about a wandering person. This is not true in most of India. However, you must tell the police even in India, because the person may be brought to the police station by someone. Or a hospital may notify the police in case of an accident. If the police knows about the missing person, they will contact you.

Most actions required to reduce chances of wandering depend on family members remaining alert. With more family members doing “work from home” and with more activity at home, everyone needs to stay more alert to prevent chances of the person feeling restless/ disoriented and walking out. Wandering can be specially problematic in COVID type of situations if the risks is so high that strangers hesitate to help a wandering person out of fear of infection.

Resources/ references for wandering.

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Incontinence.

As dementia progresses, persons start showing some incontinence, urinary or bowel. This increases the caregiving work a lot, and ensuring hygiene and cleaning up soiling (urine or fecal) can be awkward and difficult to handle. It is also be very stressful. In the beginning, urinary incontinence is more common than bowel incontinence.

Urinary incontinence is of three broad categories. Stress incontinence is when urine leaks when a person laughs, sneezes, or moves in ways that squeeze the bladder. Urge incontinence is where persons 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 persons with dementia 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. Persons with dementia do not tell when they are in pain or unwell, so medical reasons of changed behavior are often missed. Others around the person with dementia may think that the person is acting stubborn or uncooperative.

There are also many other reasons for incontinence in persons with dementia. 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 medical approaches, 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 persons, but coffee is one example.
  • Take the person to the toilet at regular intervals to reduce the probability of soiling. Make this a calm, natural activity.
  • Observe the person’s body language for signs of discomfort that may indicate a full bladder.
  • For the night, if the person 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 if 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 urine does not soak through to the foam/ cotton inside, and hygiene can be maintained.

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

Often the simplest and fastest way to handle soiling is to remain calm and give the person some other reason to make them change clothes. For example, suggest new clothes because it is evening. Or point to some turmeric stain or ink-spot and say that needs cleaning. Avoid scolding the person or arguing. Even if the person 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 smell.

Think of how to reduce such accidents in future. Find creative ways to reduce the problem, and accept that accidents will happen even if you try hard to prevent them.

Bowel incontinence is more difficult to handle, as cleaning up the person after such incidents, cleaning up clothes soiled with faecal matter, and ensuring hygiene are all more difficult. But bowel incontinence often starts much later/ is rarer. It is easier to be alert on the person’s need to pass motion. Also, persons usually communicate this more easily. Even so, accidents will happen. Be more alert after meal-times, when the bowels are likely to move. Track when the person last passed motion to know when the person may next need to go. Check for constipation. Consult the doctor for tips on dietary fibre and stool softeners. Exercise reduces the chance of constipation.

Ensure hygiene by washing and drying the person. Soiled clothes need to be disinfected and washed. Find out how to set up your home and systems to make cleaning up easier and ensure hygiene.

Use of incontinence pads and panties can reduce soiling. These are expensive but effective. Some persons wear them without fussing. Others refuse, and may even take them off and throw them away, even if soiled. Some persons accept incontinence underwear more easily than diapers. These incontinence underwear look similar to normal panties.

Resources/ references for incontinence: includes external links that may need to be adapted for India.

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Repetitive behavior.

Repetitive behavior is very common in persons with dementia. They may ask the same question or say the same thing again and again. Or they may do the same action again and again, like washing hands, or going to the toilet. They may demand food just after having eaten.

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

  • The person forgets that she has asked the question before, or done that action just a few minutes ago.
  • The person has a need that was not met by the answer or the action.
  • The person has gone in a “loop” and cannot break out of it.
  • The repetition is because of some emotion or need. The person is not able to express this need directly.
  • Something in the surroundings confuses or frightens the person.
  • Some medicines can cause repetitive movements.

It is common for family members to get irritated or feel helpless when the person with dementia repeats the same question. They may snap back. This agitates the person. The situation starts getting worse. Here are some things to try for repetitive behavior:

  • Repeat the answer more slowly. Use brief, simple sentences. Talk in a reassuring and calm way.
  • Add gestures to your answer. Or use a slightly different way of answering.
  • If the person seems disturbed, be reassuring. Use “validation” of the emotion for the underlying concern. Some links at the bottom of the page provide discussion on the validation technique.
  • Check if the person’s concern is for something different from what she is asking. Answer the actual question the person has in mind.
  • The person may just want company, and is asking questions to get attention and company. Sit with the person and give them company.
  • The person may be in a “loop”, and is repeating the question out of habit. If so, try distracting or remain respectfully silent to break the loop.

For example, a person could be asking repeatedly for the date because she expects to be taken for an outing on that date. You can answer that worry of the person. For example, you can say:  Today is Monday. We will go to the park tomorrow, Tuesday. It will be great fun.

A common situation is the person asking family members again and again whether they have eaten their meal. This could just be the person 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 for such situations. What you need to remember is that the person is not doing this to intrude or annoy. Stay calm and gentle.

Persons with dementia may also repeat an action. Some forms of repetitive actions are more common in some dementias. Examples are repeatedly tapping or keeping on doing something after it is complete. Repetitive actions can also be caused by some medicines. Discuss with the doctor and ask for a review of the prescription.

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

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

Observe the body language of the person with dementia. Use your knowledge and understanding of the person and situation. Then see how to cope. Techniques available include emotional validation, physical help, reassurance, and distraction. For example, giving the person something to hold or do may distract the person enough to stop the repetition.

Try to understand the triggers. Observe when such behavior happens to understand what may be causing it, and change that.

Resources/ references for repetitive behavior: external links (may need to be adapted for India).

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Sleeplessness and Sundowning.

Sundowning refers to the situation when a person shows increased confusion/ restlessness in late afternoon, evening, and night. The person stays awake, restless, and disoriented at night. Chances of wandering off at night are also higher. This gets very tiring for those who have to remain alert at night to prevent any harm. While the person with dementia may sleep off during the day, other family members have jobs to do during the day.

Sundowning is more common in some forms of dementia (and is also seen in delirium). While the precise reasons are not known, some techniques to reduce this are:

  • Check for medical causes for discomfort.
  • Check whether something is tiring or over-exciting the person during the day. Such fatigue or over-excitement makes it difficult to rest at night.
  • If the person is restless at night because she needs to repeatedly visit the bathroom, do not give 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.
  • Also remember that someone with dementia may get tired doing simple daytime activities as the person needs to work harder to pay attention and do things. So some persons may need a daytime nap. Without the nap, they may be too tired and restless to sleep by the time it is evening. Remain alert on possible exhaustion as a cause for restlessness. Read the Phelps book mentioned in the See also section to understand more from the viewpoint of someone with dementia.
  • 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 person with dementia is not overexcited or exhausted by the time it is evening.
  • Check to see if the night meal could be causing discomfort. Sometimes making the night time meal lighter or reducing the amount can help.
  • Also examine medication. Some of it may be causing problems. If giving medicine for sundowning, adjust the timing and dose to get the medicine’s benefit at the right time.
  • Reassurances may calm down the person.
  • Use better lighting to reduce the chances of the person frightening herself at night. A night light may help, as it will reduce the agitation of waking up in unfamiliar surroundings.
  • If the person tends to wander at night, make the house safe. Remove objects that can be tripped over, or which can harm or frighten the person .

It is difficult to always stay alert at night. Think about using systems like alarms to know if the person is getting out of bed. Take turns 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 high and could harm the person, doctors may give some medicines.

Resources/ references for sundowning: external links (may need to be adapted for India).

  • Page from Alzheimer’s Association UK Behaviour changes Opens in new window discusses restlessness/ pacing, night-time walking, and other such behavior and suggests tips for coping with these (some suggestions may not be useful in the Indian context).
  • Some information is available here (from National Institute of Aging, ADEAR:Sundowning Opens in new window.

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More on unusual and challenging behaviors.

While the specific behaviors listed above are more common as sources of worry, there are many other changed behaviors that can concern families and for which they need ideas and solutions. Examples are aggression, agitation, anxiety, depression, lack of inhibition, trailing and checking, hiding and losing things, restlessness, shouting, screaming, suspicion, etc. Inability to do things they did earlier may also cause social and family tension/ problems. The causes of changed behavior may be biological, social, and psychological. The environment around the person and the type of interactions can be contributing to the problem.

Hallucinations, and visual and spatial perception problems are also present in some persons with dementia. These increase their challenges and may even result in behavior that can be harmful to them and others. Sometimes, problems occur because the persons do not realize their problems and so they continue to drive or do other things which place themselves and others at risk. Families don’t know how to assess what the person can do safely and to stop them from doing harmful actions in time. Note that in some cases hallucinations can be related to or made worse because of vision problems and poor lighting, so addressing these can help.

When looking for suggestions on understanding and coping, families can start with the general approach suggested on the earlier page (Handling Behavior Challenges). Note that changed behavior need not just be because of specific problems being faced by the person or the environment or interactions; it could also be because of boredom and problems arising from inactivity and poor health and nutrition.

The “See Also” section below gives several resources and references for special behavior challenges. Many of these are in the form of discussions and fact sheets from various Alzheimer’s Associations, and may need to be adapted to use in India.

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See also…

Resources/ references from Dementia Care Notes and related sites.

Pages discussing aspects of above topics in detail.

A relevant interview on this site: Handling aggression, wandering, and other challenges: A nurse shares practical tips .

The pages: Caregiver resources in India and Other dementia/ caregiving resources list several resources and sites. Most of these contain tools and tips for handling difficult behavior. Many sites have downloadable files with information. You can also consider attending local dementia support group meetings (our city-wise resource pages may help you locate such groups). Online support groups/ communities are also available; check this section for some possibilities to evaluate. Please note that information and support available on on international sites/ online resources/ online support groups may not be India-specific and may need to be adjusted for use in India. It may not be relevant given the current support structures in India.

External links related to changed/ challenging behaviors and coping.

Also, consider reading 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.

Coping with Behavior Change in Dementia: A Family Caregiver’s Guide by Beth Spencer, Laurie White. This book discusses why behavior changes happen in dementia and discusses some general approaches. It also looks at each possible behavior change, explains possible causes for that change, and gives several practical tips for both preventing and handling the behavior. This book is an excellent day-to-day reference to have. It is a go-to book for behavior challenges, and organized in a very friendly way. Highly recommended. Available as paperback and Kindle ebook. Free on Kindle Unlimited.

Breaking Dementia: Finding Acceptance and Hope for This Journey by Rick Phelps, Leeanne Chames. This book is written by someone diagnosed with Early Onset AD (Rick Phelps) and a caregiver who has cared for a mother and a mother-in-law with dementia (Leeanne Chames). Both authors are also administrators of one of the largest and more effective online support forum for dementia (the Facebook group, Memory People). We read about difficulties experienced in dementia, explained by someone undergoing them, and can appreciate how relentless, overwhelming and exhausting it is to live with dementia. We also read a caregiver perspective on how to accept the situation and support the person. Written in a very honest and helpful way, this book gives a deep and realistic understanding of behaviour changes at an emotional level. Highly recommended. Available as Kindle ebook in India. Paperback also available in some countries.

The 36–Hour Day – A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by 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. Available as paperback and Kindle ebook.

Read more about these, and also see our list of suggested books at: Books on dementia and care, or surf Amazon.com or Amazon.in for your specific needs.

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