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.
A patient’s behavior depends on the state of the patient’s dementia, on what is happening, on the patient’s needs, surroundings, and other factors. You can use changed behavior to understand the patient’s situation, abilities, and needs. Once you understand what is causing the behavior, 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 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.
- Repetitive behavior.
- Sleeplessness and Sundowning.
- More on unusual and challenging behaviors.
- See also….
Dementia patients 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 because patients slip out as soon as the caregiver sits down for rest. They wander out if someone leaves the door open. Staying alert and careful all the time is very difficult. When the patient wanders off, 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, caregivers need to remain alert to stop the patient from wandering. They also have to be ready to quickly locate the missing patient in case or wandering.
Many wandering cases happen when a family is on a train. 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 careful about this. Wandering 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 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? Is it the need to meet someone, to buy something, or to “return home” to a childhood home? Could the patient be restless and reacting to feeling too hot or cold, or feeling the clothes are too tight? When does 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 are connected to the patient’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 patient may get frightened when the phone rings because when he was younger, people only called for emergencies.
Change the environment to reduce triggers. Use an understanding of the possible cause of wandering to change the things at home. Make changes in the interactions that may trigger wandering. These will reduce the chances of wandering.
Reduce things that confuse the dementia patient. Reduce clutter in the rooms. 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 sound volume.
Look for other triggers and habits and make changes. If the patient always picks up her purse before going out, remove the purse. The patient will keep looking for the purse and forget to go out. 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 wants to go to office every morning at eight, distract her at that time, or remove the clock she might see.
The patient 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 patient sees her reflection, feels someone is standing there, and turns back.
Consider reality orientation if suitable. This works for some patients, 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 patient might 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, fidget, get up and pace the room. Notice this restlessness and act in time to reduce wandering. Watch the body language. For example, squirming may indicate that the patient wants to go to the toilet. If she is taken to the toilet, she will not need to wander.
Some situations can cause wandering because they disorient the patient. Any change from the normal routine increases the chance of wandering. An outing is one example. When in a crowd or in an unfamiliar place the patient may 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, feel alarmed and start walking to find something familiar. It is unrealistic to expect a patient 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 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. How could I stop her? Merely telling people is therefore not enough. You will have to explain the danger of wandering 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, patients wander. You need to be prepared for this. Keep the numbers of friends and well-wishers handy. Keep recent photographs of the patient and descriptions (height, weight, other characteristics) with you. This will help you make copies and circulate information quickly in case of wandering. If the patient wanders, begin the search immediately with the help of family and friends. Inform the police.
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. It should be at a place the patient 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 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 is not yet stable and reliable in India. Also, patients may not carry a GPS phone or may lose it, or someone may snatch it from them.
In many countries, the police begins searching as soon as they are told about a wandering patient. This is not true in India. However, you must tell the police even in India, because the wandering 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 patient, they will contact you.
Resources/ references for wandering
- From Dementia Care Notes and related sites:
- Pages discussing reality orientation, home adaptations, and the related care aspects : Plan care for various stages of dementia, Adapt the home for dementia patients, and Improving the patient’s quality of life.
- 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.
- Several real-life cases of wandering in India, available in news reports, can be seen here: Voices: Caregiving in the news.
- Video explanations on wandering, and suggestions for it, in English and Hindi, suitable for India: view the English video on wandering on Youtube (includes captions) or view the Hindi video on Youtube (includes captions).
- From other sources in India:
- Some tips on how to search for the missing person are included here: Tips for searching for a missing person with dementia .
- To spread information about a wandering person with dementia (India), contact: Missing Senior Citizen Alert (FB page) and Missing Senior Citizen Alert Blog .
- External links on wandering from outside India: (some suggestions may not be applicable in India)
- Alzheimer’s Association, UK, has a 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 .
- More discussions on possible reasons for wandering in these fact-sheets: Wandering topic sheet (PDF file) and Wandering Behavior: preparing and preventing .
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 when urine 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 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 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 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 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 clothes. 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 smell.
Think of how to reduce such accidents in future. Fins 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, but is also rarer. It is easier to be alert on the patient’s need to pass motion. Also, patients 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 patient last passed motion to know when the patient 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.
Caregivers must also 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. Others refuse, and may even take them off and throw them away, even if soiled. Some patients accept incontinence underwear more easily than diapers. These incontinence underwear look similar to normal panties.
Resources/ references for incontinence: external links (may need to be adapted for India)
- A discussion for incontinence in dementia patients (Alzheimer’s Australia) .
- Page from Alzheimer’s Association UK Managing toilet problems and incontinence
- Urinary Tract Infection.
Repetitive behavior is very common in dementia patients. Patients 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 patient forgets that she has asked the question before, or done that action just a few minutes ago.
- The patient has a need that was not met by the answer or the action.
- The patient has gone in a “loop” and cannot break out of it.
- The repetition is because of some emotion or need. The patient is not able to express this need directly.
- Something in the surroundings confuses or frightens the patient.
- Some medicines can cause repetitive movements.
Family members often get irritated or feel helpless when the patient repeats the same question. They may snap back. This agitates the patient. The situation starts getting worse. Here are some things you can 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 patient 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 patient’s concern is for something different from what she is asking. Answer the actual question the patient has in mind.
- The patient may just want company, and is asking questions to get attention and company. Sit with the patient and give them company.
- The patient 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 patient could be asking repeatedly for the date because she expects to be taken for an outing on that date. 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 situation is the patient asking family members again and again 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 for such situations. What you need to remember is that the patient is not doing this to intrude or annoy. You must stay calm and gentle.
Patients 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 patient may be suffering from constipation.
- Perhaps the patient wants to be taken to the living room and not the bathroom. The patient may be using the wrong word.
- Maybe the patient 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.
- Patients may repeat this request because they are stuck on it mentally. In such a case, distraction will work.
Caregivers need to observe the patient’s body language. They have to use their knowledge and understanding of the patient and situation. Then they can see how to cope. Techniques available include emotional validation, physical help, reassurance, and distraction. For example, giving the patient something to hold or do may distract the patient 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)
- Page from Alzheimer’s Association UK Unusual behaviour with a discussion on repetitive behavior and other unusual behaviors.
Sundowning refers to the situation when a dementia patient shows confusion and sleeplessness as evening sets in. The patient stays awake, restless, and disoriented at night. This gets very tiring for caregivers, because they have to remain alert at night. While the patient may sleep off during the day, the caregivers have other jobs to do during the day.
Many dementia patients show sundowning. While the 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 patient during the day. Such fatigue or over-excitement makes it difficult for patients to rest at night.
- If the patient 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.
- 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 not overexcited or exhausted by the time it is evening.
- 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.
It is difficult to always stay alert at night. Families can use systems like alarms to know if the patient 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 patient, doctors may give some medicines.
Resources/ references for sundowning: external links (may need to be adapted for India)
- Page from Alzheimer’s Association UK Unusual behaviour 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).
- A discussion is available here (from National Institute of Aging, ADEAR:Sundowning (PDF file) >.
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 does 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.
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.
Resources/ references from Dementia Care Notes and related sites
Pages discussing aspects of above topics in detail
- 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 Behavior Challenges) may be helpful.
- Pages discussing reality orientation, home adaptations, and the related care aspects, and also for “driving” and dementia:
- Video explanations on wandering, and suggestions for it, in English and Hindi, suitable for India: view the English video on wandering on Youtube (includes captions) or view the Hindi video on Youtube (includes captions).
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 support group meetings of your local ARDSI chapter or any other local body (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
- General discussions:
- Notes on specific worrying behaviors and related approaches:
- Walking, night walking, and wandering: Walking About .
- Changes in sex related behavior: Sex and dementia .
- Vision and perception problems, hallucinations etc.: Sight, perception and hallucinations in dementia .
- Driving and dementia: Driving and dementia . (Many points may not apply in India. For the Indian context, see the discussions on driving on Dementia Care Notes, at: home adaptations for dementia and on planning care for various dementia stages.)
- Suggestions related to boredom, inactivity, and poor health and nutrition:
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.
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.
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.
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.
Page/ post last updated on: August 1, 2016