What caregivers can do: Understand that these episodes are the person’s response to a situation. Look for possible causes and reduce them. Satisfy any physical or emotional needs. Check if person is in pain or unwell. Check if your response or expectations are contributing to the behavior. Check if the physical surroundings are unfriendly. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and the person 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 persons with dementia show some changed behavior. This happens because of many reasons. They 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. Seeing caregiver emotions like frustration and anger can also affect persons with dementia. (This topic is discussed in detail on another page; see: How dementia impacts behavior).
Caregivers usually know that dementia impacts what persons with dementia can do or feel. But they are not ready for so many changed behaviors.
Some of the changed behavior is worrying because it may harm the person with dementia or others. This is called “behavior of concern” or “challenging behavior.”
Many think medicines are needed for worrying behavior. But caregiving techniques can be used to handle many 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 person or others. You have to try to prevent such behavior.Try and stop it before it becomes too difficult to manage (before it reaches “catastrophic” levels).
Steps taken to reduce or stop a specific behavior are a targetted approach. Here you look at a particular behavior of concern. You try to understand what causes it. You then try to prevent it by meeting the person’s needs.
Worrying behavior also reduces if the person’s sense of well-being improves. For example, home adaptations can make it easier for them to do tasks. As a result, they feel less frustrated and more capable. A suitable daily routine makes the day easier and less stressing for someone with dementia. Better communication makes the person feels more connected. Interesting and meaningful activities make the person more content and happier. All these reduce the possibility of worrisome behavior.
This page discusses an general approach to handle any difficult behavior. (This page does not discuss medicine-based approaches. Please contact your doctor for medical advice.) Additional discussions for some specific behaviors are available on another page on the site; see: Special tips for wandering, incontinence, repetitions, sundowning).
When someone with dementia behaves in an unusual way, you may feel upset. Take a moment to remember:
- Persons with dementia face real problems: Dementia occurs because the person’s brain has been harmed by a disease. The person faces problems in understanding the environment, doing things, and communicating.
- Use challenging behavior to understand the person’s problems: Persons with dementia are sometimes not able to explain what they want. They are not even clear about what they want. They are overwhelmed and frustrated. Such problems increase as dementia progresses. Their behavior is their response to the situation. Look at their behavior as information about their needs, and do not get upset by it. You probably do this in other situations. For example, when a baby cries, you see it as a sign of hunger or the need for a diaper change. That is because you accept that this is how the baby communicates.
- The behavior is the result of the person’s cognitive problems, surroundings, activities, and interactions: You may be expecting more than what the person can do. Your expectations and interactions may affect the person. Examine the situation honestly and change accordingly.
- You can try to understand the person: You are in a position to use your knowledge and abilities to understand the behavior. Do not expect the person to understand things as well as you can, because the person is already facing problems.
Once you calm down, you can think about the behavior and try to understand why it happened. Think about whether it can be harmful. Consider whether you need to do something to reduce it in the future. An approach for understanding and acting is given below.
Alzheimer’s Association, USA, on its page, Treatments for Behavior, suggests looking for (last checked on April 2014):
- 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 the behavior of the person with dementia.
- Prevent the trigger, or modify the person’s response. This reduces possible harm.
- Some tools and tips.
Changed behavior is a “behavior of concern” only if it can harm the person with dementia or others.
Dementia causes a reduction in the abilities. This makes normal activities difficult for persons with dementia. Naturally, they do some things differently. For example, a person 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 you tell them to stop, the person may not understand why and may get angry. Trying to “correct” every odd behavior fills up the day with unnecessary “battles.”
When a person with dementia acts oddly, ask yourself: is this behavior harming the person 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 person got upset
- B: Behavior: The upsetting behavior (also called challenging behavior) displayed by the person
- C: Consequence: The events happening as a consequence of the behavior
You may see nothing unusual in a situation or event. But the person with dementia 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 perspective of the person with dementia.
- 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 person’s viewpoint you may find what caused the behavior. As a family member, you can do this analysis because you know the person’s past.
- The situation as viewed by the person: The reaction of persons with dementia are affected by their cognitive functions. Something that was okay earlier may cause agitation now because the person 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 person’s environment, the task being done, the interactions, and communication. Consider, for example, a person who gets agitated at a family gathering and insists he must go home. Maybe this is because the person 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. Persons with dementia often cannot tell others that they are in pain. Some other health problem may have happened because the person forgot to take the medicine or skipped a checkup. If a hearing aid doesn’t work the person 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 person gets more agitated after passing a mirror in the hall. You may realize that the person 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 say what they want
- Unable to explain something
- Unable to understand others
- Feels insulted
- Feels frustrated
Overwhelmed by surroundings
- Cluttered with objects the person 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 the expectations and responses of others
- On seeing frustration or anger of others at the person’s actions
- When by others rushed to work faster
- When someone points out mistakes or laughs or shows amusement
- When someone shows disappointment after the person cannot do something or cannot remember something
- When someone responds to the person by withdrawing, crying, shouting, scolding, or acting sarcastic
- On being ignored
- On seeing others get anxious
Once you know the trigger, you can reduce or remove it. You can also try to reduce the harmful effect of a behavior. Keep checking whether your solution works, and adjust as 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 get many viewpoints and tips. Shared experiences give ideas of possible reasons for strange behavior, and also 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 persons are difficult to handle because they do not understand what is happening. They cannot control their emotions. Stay calm when they show anxiety, anger, aggression, hallucinations, paranoia, etc. They can usually sense your emotions. If you use calm words but are feeling angry or frustrated, the person knows your real emotion and responds to that emotion 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 person is wrong or unreasonable.
- If the person threatens your physical safety, step back or leave the room.
- If the person is harming himself/ herself, hold the person firmly. Use only the minimal strength needed to stop self-harm.
- Try to understand and meet the person’s emotional need.
The response to the person’s agitation must be based on the person’s current state, history, and beliefs. Techniques like reality orientation can work if the person understands explanations. This is more likely in early stages of dementia. However, delusional persons may not accept any explanation. Explaining or arguing will agitate them more. You have to calm the person without telling them they are wrong.
Try to understand the emotion of the person with dementia and then address that.
Supposed the person wants to meet a sister who died years ago. The person believes the sister is alive and lives next door. When someone says: “Your sister died ten years ago, don’t you remember?” the person may get angry and say it is a lie. You need a creative solution instead. For example:
- If you think the person is missing the sister, you can say: “You really miss your sister, don’t you? Tell me more about her.” This acknowledges the person’s emotional need for his sister. The person may begin talking about past incidents with the sister instead of demanding the sister’s presence. Or maybe the person 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 person wanted his sister because of some task, 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, you may say, “She’s stuck in a traffic jam.” Sometimes a simple statement pacifies the person, and the person forgets the initial demand. At other times, the person may be suspicious and point out flaws in what you are saying. You may get drawn deeper into explanations and arguments. Many caregivers think of fiblets as lying. But when persons cannot understand the truth or get very distressed by it, fiblets may be kinder than letting persons with dementia remain unhappy. Some links on fiblets are at the bottom of the page.
- Distraction may work if the person’s emotional need has been met and the person is no longer upset.
- Some persons recover faster from their agitation if they hear soothing background music. Aromatherapy works for some persons. Touch and massage can also be considered. The effectiveness of solutions varies across individuals.
Once you understand the person’s concern, find creative ways to handle it. For example, if the person thinks he has lost something, acknowledge how annoying and hurtful that is, and help the person talk about it. You can even help the person look for the object though you know it does not exist. The person, sensing your willingness to help, may be able to talk and feel better. Once the person is reassured, try distracting the person.
While various techniques can be used, calming an upset person is usually difficult. To the extent possible, try and avoid a situation where the person gets very upset.
Doctors often give medicines when family members seem worried by the patient’s behavior. Families think medicines are required because they think that when a person has a disease, medicines are needed to solve any problems. They usually don’t ask doctors about non-medical options. They don’t ask about side-effects. They may not even ask how long they should continue to use the medicine and when they need to get the next checkup. They may not go back to a doctor for repeat visits and may continue the medication indefinitely.
Some medicines can reduce dementia symptoms like memory loss. These medicines do not cure the damage in the brain, but they can help the person by reducing the symptoms. However, most medicines given for behavior are anti-psychotics. Doctors may give anti-psychotics even when they are not needed. Though medicines can help some patients, they do not help all patients. They can even harm some patients. Anti-psychotics typically have been developed for mental health problems and are not suitable 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 say 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. They also say that careful evaluation and regular review is needed if medicines are given. Note that some medicines that help persons with Alzheimer’s Disease (AD) can harm patients of Lewy Body Dementia (LBD). Unfortunately, it is common for persons with LBD to be misdiagnosed as having AD.
If your doctor suggests medicines, discuss the pros and cons with the doctor. (you can also see an advanced page on this topic in the resource sections below)
Basically, when facing challenging behavior, non-medicinal approaches should be considered and tried first. Anti-psychotics should be used only if required. They should only be used for the right duration and in the correct dosage, and the family must remain alert about side-effects. Regular review by a doctor is a must.
Resources/ references from Dementia Care Notes and related sites
Pages discussing some aspects from above in detail:
- Discussion on dementia and behavior: How dementia impacts behavior
- Discussions and special tips for some challenging behaviors are available on this site here: Special tips for wandering, incontinence, repetitions, sundowning.</li
- The advanced topic page, Topic reads: anti-psychotic medicines and dementia, includes excerpts and suggests links you can use to prepare for your discussion with the doctor.
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.
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
External links relevant for topics of this page/ referred to above
- Treatments for Behavior Opens in new window
- Tips to meet daily dementia behavior challenges Opens in new window
- Caring for Alzheimer’s: Difficult Behaviors Opens in new window
- Behaviour Changes Opens in new window: Includes links to some prominent 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 Opens in new window..
- Some links to understand medication and behavior: The Alzheimer Society UK’s page Antipsychotic drugs Opens in new window.
- A discussion on validation versus reality orientation for handling dementia behavior Opens in new window
- Validation Therapy and Dementia: Pros and Cons Opens in new window
- Handling Agitation in Dementia Opens in new window: Includes several simple and practical tips.
- A discussion on fiblets and therapeutic lies to handle challenging dementia behaviors Opens in new window.
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.
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 some countries, paperback may also be available.
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 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. Availabel as paperback and KIn dle ebook.
See the full list of suggested books at: Books on dementia and care or surf Amazon.com or Amazon.in for your specific needs.