What caregivers can do: Understand that these episodes are the patient’s response to a situation. Look for possible causes and reduce them. Satisfy any physical or emotional needs. Check if patient is in pain or unwell. Check if your response or expectations are contributing to the behavior. Chck if the physical surroundings are unfriendly. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and patient safe.
- There are many changes in behavior. Some may cause worry.
- Ensure that you are calm and positive.
- The approach to changed behavior.
- A non-drug approach
- Some tools and tips
- Medicines for changed behavior
- See also…
Almost all dementia patients show some changed behavior. This happens because of many reasons. Patients may react because they do not understand what is happening. They may have unmet needs. They are frustrated because they cannot communicate. They may not be able to handle their emotions. They may act in socially inappropriate ways. Unsuitable surroundings make daily tasks difficult for them. People expect them to do things they cannot do. Caregiver emotions like frustration and anger can also affect patients. Basically, behavior changes happen because of a combination of factors. See: How dementia impacts behaviour.
While caregivers know that dementia impacts what patients can do or feel, they are usually unprepared for so many changed behaviors. They don’t know what to do when the patient shows such behavior.
Changed behaviors may be of many types, but some of the changed behavior is worrying because it may harm the patient or others. This is called “behavior of concern” or “challenging behavior.”
Many caregivers think medicines are required to improve the situation. But caregiving techniques can be very useful to handle such changes. The Alzheimer Society UK’s page on Antipsychotic drugs says 90% of people with dementia experience behavioural and psychological symptoms, such as restlessness and shouting, at some point. These distressing symptoms can often be prevented or managed without medication.
As a caregiver, you need to look at behaviors that can harm the patient or others. You have to try to prevent it, or at least stop it before it becomes very difficult to manage (reaches “catastrophic” levels).
Steps you take to reduce or stop a specific behavior are part of a targetted approach. Here you look at a particular behavior of concern. You try to understand what causes it, and then try to prevent it by meeting the patient’s needs.
You can also reduce the chances of worrying behavior by improving the patient’s overall feeling of well-being. For example, when you adapt the home to make it easier for the patient to do tasks, the patient is less frustrated and feels more capable. When you have a suitable daily routine for the patient, it makes the day easier and less stressing for the patient. When communication is better, the patient feels more connected. Interesting and meaningful activities that are added to the person’s day make the patient more content and happier.
This page discusses an approach to handle any difficult behavior in general. Additional discussions for some specific behaviors are available at: : Special tips for wandering, incontinence, repetitions, sundowning). This page does not discuss medicine-based approaches. Please contact your doctor for medical advice.
(Image courtesy: National Institute on Aging/National Institutes of Health)
When someone with dementia behaves in an unusual way and you are distressed, take a moment to remember:
Dementia patients face real problems: Dementia occurs because the person’s brain has been harmed by a disease. The patient faces problems in understanding the environment, doing things, and communicating.
This challenging behavior is information about the patient’s problems:Dementia patients are sometimes not able to explain what they want. They are not even clear about what they want. They are overwhelmed and totally frustrated. Such problems increase as dementia progresses. Their behavior is their response to the situation. View their behavior as information about their needs, rather than getting upset by it. You probably do this in other situations. For example, when a baby cries, this is seen as a sign of hunger or the need for a diaper change. That is because people accept that this is how the baby communicates.
- The behavior is the result of the patient’s cognitive problems and the environment, activities, and interactions: You may be expecting more than what the patient can do. Your expectations and interactions may affect the patient. Examine the situation honestly, and change accordingly.
- You are in a position to understand the patient: Use your knowledge and abilities to understand why the patient is reacting in this way. Do not expect the patient to understand the situation as well as you can, because the patient is already facing problems.
Once you have calmed down you can observe and analyze the behavior and its impact. Decide whether the behavior can be harmful and whether you need to do something about it. An approach for understanding and acting is given below.
Alzheimer’s Association, USA (April 2014), on its page, Treatments for Behavior, suggests looking for:
- Triggering situations: Events or changes in a person’s surroundings that have a role in triggering behavioral symptoms.
- Medical evaluation for contributing factors: A thorough medical evaluation, especially if symptoms appear suddenly.
- Non-drug approaches: Non-drug approaches to managing behavior symptoms promote physical and emotional comfort.
- Using coping tips
- Medications for behavioral symptoms: To be considered if non-drug approaches fail after being applied consistently
Medicines should be considered only under certain situations. Approaches that don’t use medicines (non-pharmacological/ non-drug approaches) should be tried first.
The broad components in the approach discussed here are:
- Consider: Is the behavior a “behavior of concern”?
- Use ABC analysis to understand patient behavior.
- Prevent the trigger, or modify the patient’s response. This reduces possible harm.
- Some tools and tips.
Changed behavior is a “behavior of concern” only if it can harm the patient or persons around the patient.
Dementia causes a reduction in the abilities of patients. This makes normal activities difficult for them. Naturally, they do some things differently. For example, a patient may wear a nightgown inside-out, or pour tomato ketchup over ice-cream. Family members are often uncomfortable with such behavior. But these type of actions do not harm anyone. If family members tell them to stop, the patient may not understand why and may get angry. Trying to “correct” every odd behavior fills up the day with unnecessary “battles.”
When the patient acts oddly, ask yourself: is this behavior harming the patient or anyone else? If so, it is a behavior of concern. If not, ignore it.
Examples of possible harmful behavior are:
- Wandering, restlessness.
- Screaming, abusing, being rude, mocking, talking unacceptably.
- Hitting, slapping, kicking.
- Acting suspicious and accusing people.
- Hoarding items or losing them.
- Disinhibition (taking off clothes, asking people for kisses).
- Sleeplessness and Sundowning
- Hallucinations or delusions.
- Poor personal hygiene (not brushing teeth, not bathing properly).
- Eating difficulties.
- Anxiety, clinging.
- Apathy, withdrawal.
- Sexual advances, groping.
- Repetitiveness (physical actions, verbal).
ABC analysis is an approach to understand and address difficult behavior. It looks at three aspects:
- A: Antecedent: The event that happened just before the patient got upset
- B: Behavior: The upsetting behavior (also called challenging behavior) displayed by the patient
- C: Consequence: The events happening as a consequence of the behavior
You may see nothing unusual in a situation or event. But the patient is responding to it in a harmful way. ABC analysis identifies the triggers of the behavior so that you can see what to modify to reduce that behavior.
The idea is to examine the situation from the patient’s perspective.
- Personal history and characteristics: Each person has some likes and dislikes, fears and habits, etc. You may get agitated or hurt by some things because of your memories. By looking at the current situation from the patient’s viewpoint you may find what caused the behavior. As a family caregiver, you can do this analysis because you know the patient’s past.
- The situation as viewed by the person: The patients reaction are affected by their cognitive functions. Something that was okay earlier may cause agitation now because the patient cannot handle it well enough, and cannot hide any agitation as he/ he may have done earlier. It is useful to mentally review the typical symptoms of dementia to spot possible causes of changed behavior.
When examining the situation, look at multiple aspects like the patient’s environment, the task being done, the interactions, and communication. Consider, for example, a patient who gets agitated at a family gathering and insists he must go home. Maybe this is because the patient doesn’t recognize the people, or cannot follow the conversation, or does not know or remember where the bathroom is.
Check for health problems, like pain or infection. Dementia patients often cannot tell others that they are in pain. Some other health problem may have happened because the patient forgot to take the medicine or skipped a checkup. If a hearing aid doesn’t work the patient may get agitated instead of asking for a new aid. Some drugs can cause delusions and hallucinations.
Observation and creative thinking can also help to find possible causes of changed behavior. For example, suppose the patient gets more agitated after passing a mirror in the hall. You may realize that the patient thinks the reflection in the mirror is a stranger.
Some things to consider when looking for possible triggers (this list is not exhaustive):
One or more medical reasons
- Problems with hearing aid or glasses
- Dehydration or malnutrition
- Side-effect of medication
Feeling emotionally disturbed
- Remembering some very unpleasant incident
- Scared of someone
- Missing some dear one
Dissatisfied/ frustrated because of communication failure
- Unable to tell caregiver their needs
- Unable to explain something
- Unable to understand
- Feels insulted
- Feels frustrated
Overwhelmed by surroundings
- Cluttered with objects the patient cannot recognize or finds frightening
- Does not know where the bathroom is
- Does not know where he/ she is
- Unfamiliar people
- Too dark
Doing something frustrating
- Activity is too complex
- Activity is boring or trivial or insulting
- Activity is unfamiliar
- Instructions are overwhelming
- Lacks coordination required for the activity
Responding to caregiver expectations and responses
- Caregivers showing frustration or anger at patient actions
- Caregivers hurrying the patient to work faster
- Caregivers pointing out mistakes or laughing or showing amusement
- Caregivers showing disappointment when patient cannot do something or cannot remember something
- Caregivers withdrawing, crying, shouting, scolding, or acting sarcastic
- Caregivers ignoring the patient
- Caregiver showing anxiety
Once you know the trigger, you can reduce or remove it. You can also try to reduce the harmful impact of a behavior. Keep checking whether your solution works, and adjust it if needed.
Support groups are useful to discuss problems and share ideas. These could be in-person or online groups. You will meet other caregivers in such forums, and can get many viewpoints and helpful tips. Shared experiences can give you a much better idea of possible reasons for strange behavior, and possible solutions. Other good sources for ideas are dementia care books and manuals.
(This section covers general tools and tips that can be used for any difficult behavior. For discussions and tips on some commonly found difficult behaviors, read: Special tips for wandering, incontinence, repetitions, sundowning)
Agitated patients are difficult to handle because they do not understand what is happening and cannot control their emotions. You need to stay calm when patients show anxiety, anger, aggression, hallucinations, paranoia, etc. Patients can usually sense the caregiver’s emotions. If you use calm words but are feeling angry or frustrated, the patient knows your real emotion and responds to it by getting more agitated.
What usually helps:
- Feel calm.
- Listen in a calm, affectionate, and reassuring manner.
- Use verbal and non-verbal ways of reassuring.
- Avoid arguing. Do not insist that the patient is wrong or unreasonable.
- If the patient threatens your physical safety, step back or leave the room.
- If the patient is harming himself/ herself, hold the patient firmly. Use only the minimal strength needed to stop self-harm.
- Try to understand and meet the patient’s emotional need.
The response to a patient’s agitation must be based on the patient’s current state, history, and beliefs. Techniques like reality orientation can work if the patient understands explanations. This is more likely in early stages of dementia. However, delusional patients may not accept any explanation. Explaining or arguing will agitate them more. Caregivers have to calm the patients without telling them they are wrong.
Try to understand the emotion of the patient and then address that.
Supposed a patient wants to meet a sister who died years ago. The patient believes the sister is alive and lives next door. When the caregiver says: “Your sister died ten years ago, don’t you remember?” the patient may get angry and call the caregiver a liar. The caregiver needs to come up with a creative solution instead. For example:
- If the caregiver feels the patient is missing the sister, the caregiver can say: “You really miss your sister, don’t you? Tell me more about her.” This acknowledges the patient’s emotional need for his sister. The patient may begin talking about past incidents with the sister instead of demanding the sister’s presence. Or maybe the patient just wants to talk to someone affectionate. Emotional validation is a very useful technique. View some related links at page bottom.
- If it seems that the patient wanted his sister because of some task, the caregiver can try to find that out. A possible way could be: “I don’t know when she will come. Can I help you with something till then?”
- Sometimes, therapeutic lies or fiblets are used. For example, the caregiver may say, “She’s stuck in a traffic jam.” Sometimes a simple statement pacifies the patient, and the patient forgets the initial demand. At other times, the patient may be suspicious and point out flaws in what the caregiver is saying. The caregiver may get drawn deeper into explanations and arguments. Many caregivers think of fiblets as lying. But when patients cannot understand the truth or get very distressed by it, fiblets may be kinder than letting patients remain unhappy. Some links on fiblets are at the bottom of the page.
- Distraction may work if the patient’s emotional need has been met and the patient is no longer upset.
- Some patients recover faster from their agitation if they hear soothing background music. Aromatherapy works for some patients. Touch and massage can also be considered. The effectiveness of solutions varies across patients.
Once you understand the patient’s concern, find creative ways to handle it. For example, if the patient thinks he has lost something, acknowledge how annoying and hurtful that is, and help the patient talk about it. You can even help the patient look for the object though you know it does not exist. The patient, sensing your willingness to help, may be able to talk and feel better. Once the patient is reassured, try distracting the patient.
While various techniques can be used, calming an upset patient is usually difficult. To the extent possible, try and avoid a situation where the patient gets very upset.
Doctors often prescribe medicines when family members seem worried by the patient’s behavior. Families expect medicines because they assume that when a patient has a disease, medicines will solve the problems. This is especially true in India, where people usually don’t ask doctors about non-medical options. Also, they don’t ask about side-effects or how long they can continue to use the medicine and when they need to get the next checkup. Also, sometimes they don’t go back to a doctor for review, and continue the medication indefinitely.
Some medicines can reduce dementia symptoms like memory loss. These medicines do not cure any actual damage in the brain, but they can still help the patient. However, most medicines given for behavior problems are anti-psychotics. Doctors tend to prescribe anti-psychotics even when they are not needed. These medicines may not help many patients, and can even harm some patients. Anti-psychotics have typically been developed for mental health problems and are unsuitable for persons with dementia. Side-effects are common and can be severe.
Various Alzheimer’s Associations and other dementia bodies oppose the over-prescription of anti-psychotics. They recommend that non-drug care approaches should be tried first. They have guidelines of when to consider medicines. They discuss the side-effects and trade-offs involved, and say that careful evaluation and regular review is needed if medicines are given. Note that some medicines that may help persons who have Alzheimer’s Disease can harm patients of Lewy Body Dementia; it is common for persons with LBD to be misdiagnosed as having AD.
If your doctor suggests medication, discuss the pros and cons with the doctor. Our page: Topic reads: anti-psychotic medicines and dementia includes excerpts and suggests some links that you can use to prepare for your discussion with the doctor.
Basically, when facing challenging behavior, non-medicinal approaches should be considered and tried first. Anti-psychotics should only be used when required, for the correct duration and in the correct dosage, and with alertness about side-effects. Regular review by a doctor is a must.
Discussion on dementia and behavior: How dementia impacts behaviour
Discussions and special tips for some challenging behaviors are available on this site here: Special tips for wandering, incontinence, repetitions, sundowning.
Some relevant interviews on this site:
- Challenges of accusations and paranoia: Father thought I wanted to kill him .
- Coping with addictions and rage: His condition affected every sphere of my life .
- Handling aggression, wandering, and other challenges: A nurse shares practical tips .
The full list of interviews is here: Voices: Interviews with dementia caregivers, volunteers, and experts
Caregiver resources in India and Other dementia/ caregiving resources: These pages list several resources and sites. Most of these contain tools and tips for handling difficult behavior. Many sites have downloadable files with information. Please note that the information 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.
Amongst the various international resources, some particularly helpful for this topic are:
- Tips to meet daily dementia behavior challenges
- Caring for Alzheimer’s: Difficult Behaviors
- Unusual behaviours: This gives links to pages that cover various types of worrisome behaviors.
- A set of downloadable documents discussing various behaviors, available from the website of National Institute of Aging, ADEAR, at this link..
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.
Some links to understand medication and behavior: The Alzheimer Society UK’s page Antipsychotic drugs.
The following books have detailed explanations for a range of behaviors. They have tips to help caregivers understand and cope with changed behaviors. Many things depend on the culture and context, so you will need to use creativity to adjust the suggestions in the books so that they help in your situation.
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.'
It is a very useful reference to have. It explains possible causes for various behaviors. It has several practical tips for both preventing and handling such behavior. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or any other vendor.
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 many behavioral symptoms and how to cope with them. It is useful for caregivers who want 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 how to respond positively to changed behavior. For the paperback version, see Amazon.com, or, if you are in India, see Amazon.in or Flipkart or any other vendor.
Other links that can help:
- A discussion on validation versus reality orientation for handling dementia behavior
- Validation Therapy and Dementia: Pros and Cons
- A discussion on fiblets and therapeutic lies to handle challenging dementia behaviors
[This page was last updated in June, 2015]