Dementia patients sometimes act in strange ways, exhibiting repetitiveness, extreme anger and agitation, or paranoia, or accusing people of crimes. They even get violent and may hit people around them.
Behavior changes in dementia patients are almost universal, and there are multiple terms used to describe them, including behaviours of concern, needs-driven behaviour, challenging behaviour, difficult behaviour, disruptive behaviour, neuropsychiatric symptoms of dementia, behavioural and psychological symptoms of dementia (BPSD), etc. These terms focus on different aspects of changed behaviour and their impact.
On some days, the patient gets agitated (or wanders or gets abusive or withdraws or acts in ways harmful to self/ others)
What caregivers can do: Understand that these episodes are the patient’s response to a situation. Look for and reduce potential triggers. Satisfy any physical or emotional needs. Check if patient is in pain or unwell. Check if your response or expectations or the physical environment are contributing to the behavior. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and patient safe.
Changed behaviour of dementia patients is often because they lack the means to understand what is happening, and/ or have unmet needs they cannot communicate. They may be unable to regulate their own emotions, and may become abusive and aggressive, and hit people. They may show disinhibition or do socially inappropriate/ unacceptable things. An unsuitable physical environment could makes things difficult for the patient and result in changed behavior. Unrealistic expectations of persons around them add to the problems the patient is facing. Responses of caregivers (such as frustration/ anger/ facial expressions) can make the patient’s behavior more challenging. Basically, behaviour is caused by a combination of factors, and cannot be viewed as an isolated problem to be solved independently. (see also: How dementia impacts behaviour)
While behaviour may change in many ways, some of this changed behaviour is worrisome because it may harm the patient or others; this is often called “challenging behaviour.” The best way to handle challenging behaviour is to try and prevent it, or at least stop it before it reaches “catastrophic” levels.
Finding ways to address some specific behaviour is a targetted approach. It focuses on a specific behaviour which you feel harms the patient or people around the patient. It involves understanding the patient’s context and identifying triggers for the behaviour we are worried about (situations/ events etc.). We then try to meet any unmet need and reduce/ remove these triggers. It is important to remember that challenging behaviours often reduce we manage to improve the overall sense of well-being of the patient; we can do this using means like home adaptations, use of a suitable daily routine, effective methods for communication and helping with daily tasks, engagement in meaningful, fulfilling activities, etc. Having realistic expectations is very important.
On this page
- Ensure your mindset is calm and positive
- The overall approach to changed behaviour
- A non-pharmacological approach
- Consider: Is the behavior a “behavior of concern”?
- Use ABC analysis to understand why the patient behaves like this
- Prevent the trigger, or modify the patient’s response/ reduce possible harm
- Some tools and tips
- Medication and changed behavior
- See also…
Caregiver manuals, support groups, shared experiences, all help us improve our skill of understanding the patient and handling challenging behaviour.
(Image courtesy: National Institute on Aging/National Institutes of Health)
Take a moment to remember:
Dementia patients face genuine problems: Remember that dementia has damaged the patient’s brain, and all day long, the patient faces problems in understanding the environment, in doing things, in communicating with others. Any difficult behaviour is not because the patient is being stubborn.
This challenging behavior is the patient’s way to communicate: Dementia patients are sometimes just not able to find the words and sentences to explain what they want. They are not even clear about what they want. They are overwhelmed and totally frustrated and know no other way to handle it. (Such problems increase as dementia progresses). We can view their behaviour as their only way to communicate their needs in a situation, and treat it matter-of-factly as “information” rather than get offended or sad. We are able to do this in other situations, such as seeing a baby’s crying as a sign of hunger or needing a diaper change, because we accept the fact that the baby is not able to communicate.
- The behavior is not an isolated event; it is the result of the combination of the patient’s cognitive problems and the environment and the persons around the patient: We have to be willing to see how other factors can be contributing to the behavior. Many things that seem normal to us may be adding to the difficulty patients are facing. Our expectations and responses/ coping mechanisms may also be making the behavior worse. We have to examine the situation honestly, and be ready to make changes.
- We are fortunate that our brains are working, and so we can try to understand the patient and the situation: Our advantage is that our brain is intact and functioning better that that of the patient and the context of the behavior. Let us, therefore, try to understand why the patient is reacting to the current situation in this way.
Firstly, it is important to understand that behavioural symptoms are very common and that non-pharmacological approaches are sufficient in most cases. An excerpt (taken April 2014) from Alzheimer Society UK’s page Antipsychotic drugs:
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.
Another excerpt (taken April 2014) from Alzheimer Society UK’s page Unusual behaviour:
Each person is an individual, with their own preferences and character traits. However, certain forms of behaviour are particularly common in people with dementia. If the person you are caring for has difficulty expressing him or herself in words, the unusual behaviour may become more extreme. By working out what each behaviour means, and finding ways to overcome the problem, the situation can become more manageable.
Discussing how to handle dementia behaviour, Alzheimeros 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
Overall, current thinking is that non-pharmacological approaches should be considered and tried out first, and medicines considered only under certain situations. This page focuses on non-pharmacological approaches, but also includes some references to authoritative sites for the current understanding, pros and cons, of medical approaches.
Also, given that behaviour will change in dementia, caregivers need to have realistic expectations and only focus on behaviours that are harmful to the patient or others. It is unrealistic to think that you can change things enough for the patient to be just like the person they were before dementia.
The broad components in the approach discussed here are:
- Consider: Is the behavior a “behavior of concern”?
- Use ABC analysis to understand why the patient behaves like this
- Prevent the trigger, or modify the patient’s response/ reduce possible harm
- Some tools and tips
Sometimes, a patient may behave in a strange way, but so long as this behaviour is not harming the patient or persons around the patient, it is not a “behaviour of concern” and we need not do anything about it just because it is “odd”.
Sometimes we are uncomfortable when patients behave in strange ways, and we try to “correct” such behavior to fit “normal” behavior. For example, a patient may wear a nightgown inside-out, or wants to pour sambhar over the gulab jamun. Such behavior, while odd, does not harm either the patient or anyone else.
Dementia patients act odd in a myriad number of ways. We should not expect them to act as normal persons because they are facing genuine cognitive decline which makes apparently normal things more difficult for them. Attempts to explain things to them don’t always work, and trying to “correct” them for every odd behavior makes the day fill up with too many “battles.”
Our focus has to be to ensure that the patient does not harm himself/ herself and the people around. So, when the patient acts oddly, we ask ourselves: is this behavior harming the patient or anyone else? If so, it is a behavior of concern. If not, ignore it.
Examples of possible challenging behavior are:
- Wandering, restlessness
- Screaming, abusing, being rude, mocking, talking unacceptably
- Hitting, slapping, kicking
- Acting suspicious and accusing people
- Hoarding items, 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 challenging behaviour of a patient. It looks at three aspects:
- A: Antecedent: The event that happened just before the patient got upset
- B: Behaviour: The upsetting behaviour (also called challenging behaviour) displayed by the patient
- C: Consequence: The events happening as a consequence of the behaviour
The idea of ABC analysis is to identify the triggers of the challenging behaviour so that we can see what to modify to reduce the chance of recurrence. The behavior is a response of the patient to a situation. We may see nothing unusual in the situation, but for some reason, the patient is responding in a way that could harm him/ her or others.
The trick here is to examine the situation from the patient’s perspective.
- Personal history and characteristics: Each person has his/ her own likes and dislikes, fears, habits, etc. We all have memories of the past, and some things agitate or hurt us. We need to look at the current situation from the viewpoint of the patient, and see what could have triggered the behavior. Knowing the patient well enough helps. Family caregivers are well-equipped for this, because they know the patient’s past.
- The situation, as viewed by the person: The person’s reaction is also determined by the effect of dementia on his/ her cognitive functions. Something that may not have caused agitation earlier may do so now, because the patient is not able to process information as well, or not able to hide agitation as he/ she may have been doing earlier. It helps to remember the problems the patient faces because of dementia: the memory loss, disorientation in space and time, the inability to understand, the inability to state needs, and so on.
When examining the situation, we must look at the environment around the patient, the type of task that was being done, the people involved, and the type of communication.
Consider, for example, a patient who gets agitated at a family gathering and starts insisting that he wants to go home. What is a cheerful gathering for the rest of the family may be stressful for the patient, because he/ she doesn’t recognize the people, cannot follow the conversation, and is not sure where the bathroom is. We can understand this if we place ourselves in the patient’s shoes and think of the setting as it must appear to someone who has dementia.
A trigger that may not be as obvious is a health condition that the patient is unable to understand or communicate. Pain, for example. Dementia patients are not always able to tell others that they are in pain. Or the patient may have developed a medical condition because he/ she forgot to take medication or skipped a checkup. If the reading glasses prescription is old, the patient may get agitated instead of realizing that the glasses need to be changed. Delusions and hallucinations sometimes occur because of the side-effect of drugs.
An open mind and creative thinking is often helpful in identifying possible triggers. For example, we may see that the patient gets more agitated after passing a mirror in the hall, and realize that the patient thinks of the reflection as a stranger whom she does not know. Attending support group meetings or meeting other caregivers also helps, because we get ideas when we share incidents.
Some things to consider when looking for possible triggers (this list is not exhaustive; it is only to start you thinking):
One or more medical reasons
- Problems with hearing aid or glasses
- Dehydration or malnutrition
- Side-effect of medication
Feeling emotionally disturbed
- Reminded of some traumatic incident
- Scared of someone
- Missing some dear one
Dissatisfied/ frustrated because of communication failure
- Unable to tell caregiver what he/ she needs
- Unable to explain something
- Unable to understand
- Feels insulted/ frustrated
Overwhelmed by surroundings
- Cluttered with objects he/ she 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/ trying to do something that is frustrating
- Activity is too complex
- Activity is boring/ trivial/ insulting
- Activity is unfamiliar
- Instructions are overwhelming
- Lacks coordination required for the activity
Responding to caregiver expectations/ responses/ facial expressions
- Caregivers showing frustration/ anger at patient actions
- Caregivers hurrying the patient to work faster
- Caregivers pointing out mistakes/ laughing/ showing amusement
- Caregivers showing disappointment when patient cannot do something as well as the caregivers expect/ cannot remember something
- Caregivers withdrawing/ crying/ shouting/ scolding/ acting sarcastic
- Caregivers acting condescending/ ignoring the patient
- Caregiver facial expression alarms patient
Once the trigger is understood, we can try to reduce or remove the trigger. We can also try to reduce the harmful impact of the difficult behavior. Again, it helps to know the patient well, and to keep in mind the impact of dementia on his/ her ability to handle the surroundings.
Of course, we need to keep checking whether our solution is working, and fine-tune it to make it better. It is not always easy.
Support groups are very useful forums to discuss problems and share ideas.Because we meet several caregivers in such groups, we can obtain a range of perspectives and helpful tips.
(In this section, we discuss general tools and tips that can be considered for most types of challenging behaviours. For specific discussions and tips on some such behaviours, check Special tips for wandering, incontinence, repetitions, sundowning)
When patients get agitated, they are difficult to handle because they are not in control of their emotions, and are not able to understand what is happening. In general, caregivers need to stay calm even if patients are showing extreme anxiety, anger, aggression, hallucinations, paranoia, etc. Patients can almost always sense the caregiver’s emotions. So if the caregiver says calm words but is feeling angry or frustrated, the patient will respond to the emotion and not the words.
What usually helps:
- Staying calm.
- Listening in a calm, affectionate, reassuring manner.
- Using verbal and non-verbal ways of reassuring.
- Avoiding arguing/ correcting/ insisting that the patient is wrong or unreasonable.
- If the patient is threatening the physical safety of the caregiver, stepping back or leaving the scene.
- If the patient is harming himself/ herself, holding the patient firmly (with the minimal strength necessary to stop self-harm).
- Try to understand and address the patient’s emotional need.
An effective response to a patient’s agitation is one that takes into account the patient’s current state and beliefs.
If the patient is confused about a situation or his/ her surroundings, but in a position to understand them, techniques like reality orientation may be effective. However, if the patient is delusional and firmly believes in some other reality, and if the caregiver tries to explain/ argue with/ correct the patient, the patient will only get more agitated. This is because the patient’s delusion is real to the patient, it is the patient’s truth. To the patient, anyone saying anything else is a liar and cannot be depended on.
That a dementia patient may not be able to “understand” what is “correct” is a very big challenge to a caregiver who has to find a way to pacify the patient without calling the delusion a delusion.
One way of doing so is understanding the underlying emotion of the patient and addressing that.
For example, a patient may insist on meeting a sister (who died years ago). He/ she is deluded and believes that to be the truth. Suppose the caregiver says: “Your sister died ten years ago, don’t you remember?” The patient is likely to get furious and call the caregiver a liar, or the patient may withdraw and feel the caregiver is conspiring against the patient. The patient is convinced of a different truth, and has no reason to change that belief, and cannot understand anything else because of dementia.
Depending on the situation, the caregiver may have to come up with a creative solution. For example:
- If the caregiver feels the patient is missing his/ her 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 and may be able to move the patient into a reminiscence mood 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 (some related links at page bottom).
- If it seems that the patient wanted his sister because of some task that is incomplete, the caregiver can try to find out why the patient wanted the sister to visit. A possible way could be: “She may not be able to come right now. Can I help you with something in the meanwhile?”
- Sometimes, “therapeutic lies” or “fiblets” are required. Many caregivers are uncomfortable with the idea of these, but given that the patient is unable to understand reality and the truth, these sometimes become necessary. So, the caregiver may try saying, “She’s gone to the market, and she’s stuck in a traffic jam.” Sometimes a simple statement may pacify the patient, and then the patient may forget his/ her demand for the sister. At other times, the patient may be suspicious and point out flaws in the “story” being built, and the caregiver may get drawn more and more into an imaginary reality being presented to the patient. Caregivers vary in how comfortable they are about using fiblets/ therapeutic lies and how well they can do it (some related links at page bottom).
- Distraction works sometimes if the patient is not too agitated, and if the emotional need has been pacified.
- For some patients, soft, soothing background music can help them recover faster from a fit of agitation. Aromatherapy also works for some patients, as do touch and massage. However, all these vary widely from patient to patient and should be used only to the extent they help.
There can be many creative ways to handle the patient’s concern once we understand it. For example, if the patient claims to have lost something, we can acknowledge how annoying/ hurtful the loss must be, and help the patient talk about it, or even help the patient “look” for the object (even if we know it does not exist). The patient, sensing our willingness to help, may be able to talk of the lose and hurt and feel better. Once the patient is reassured, it is often easier to distract the patient.
If we remember that the patient has a genuine problem, and try to understand their reality and concern, we may able to find a way to lead the patient out of the challenging behaviour in a compassionate way. But this is usually difficult, and the best way is to try and avoid a situation where the patient gets so upset.
Medication may be suitable for some situations and not for others. Caregivers need to understand and discuss the pros and cons with their doctors, including side-effects associated with the medications. This section provides links to some pages from the Alzheimer’s Society, UK and Alzheimer’s Association, USA, which caregivers can read so that they are better prepared for their discussion with the doctors.
Basically, according to current thinking, antipsychotics tend to be overprescribed for dementia patients. They are indicated for some situations, but the side-effects also need to be considered while deciding on their use. For example, this page Antipsychotic drugsfrom Alzheimer’s Society, UK, mentions the over-prescription of antipsychotics: (excerpt taken in April 2014)
There are treatment and care approaches that can prevent BPSD from occurring, or help to manage them without needing to resort to medication. Yet people are frequently prescribed antipsychotic drugs as a first resort. Antipsychotic drugs were developed to treat people with schizophrenia. They eliminate or reduce the intensity of psychotic experiences such as delusions and hallucinations, and can also have a calming or sedative effect. In some cases antipsychotics can be the right treatment option. However, they are linked to serious side effects, particularly when used for longer than 12 weeks.
The page also states that people with dementia are at a high risk of dangerous side effects. Some more quotes:
The side-effects of antipsychotics can be very harmful and can rob individuals of their quality of life. Side effects include excessive sedation, dizziness and unsteadiness, which can lead to increased falls and injuries, as well as parkinsonism (tremors and rigidity), body restlessness, reduced well-being, social withdrawal and accelerated cognitive decline….
antipsychotic drugs only have modest benefits for specific symptoms and for a short time period.
The Alzheimer’s Association, USA, on its page Treatments for Behavior suggests the following guidelines for considering/ using antipsychotics (as per the page version in April 2014):
Based on scientific evidence, as well as governmental warnings and guidance from care oversight bodies, individuals with dementia should use antipsychotic medications only under one of the following conditions:
- Behavioral symptoms are due to mania or psychosis
- The symptoms present a danger to the person or others
- The person is experiencing inconsolable or persistent distress, a significant decline in function or substantial difficulty receiving needed care
Antipsychotic medications should not be used to sedate or restrain persons with dementia. The minimum dosage should be used for the minimum amount of time possible. Adverse side effects require careful monitoring.
Also note that some antipsychotics work for Alzheimer’s Disease but can cause severe damage if given to someone with Lewy Body Dementia (see: Treatment Options); unfortunately, persons with Lewy Body Dementia are often misdiagnosed as having Alzheimer’s Disease, which means a lot of caution is needed.
In India, we often don’t think of asking doctors about non-medical options, or about the side-effects of medicines or what to watch out for, and how long the medicine is to be continued, and so on. But we need to be informed and alert on these aspects so that medication is used when appropriate and not otherwise, and is used for the correct duration and in the correct dosage, and so that we are alert on possible side-effects and can act in time. Also, sometimes we don’t go back to a doctor for review, and continue the medication indefinitely, but regular review is a must for anti-psychotics.
[The information in this section is merely a collation of information from standard, authoritative sources and intended to facilitate caregivers to check out the data for themselves and be better informed when they consult the doctor.]
Discussion on dementia and behaviour: How dementia impacts behaviour
Discussions and special tips for some challenging behaviours 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/ sites. Almost all these sites/ resources contain tools and tips for handling difficult behaviour. Many sites have downloadable files with information. Please note that the information/ tips may not be India-specific and may need to be adjusted for use in India/ may not always be relevant given the current support structures in India.
Amongst the various international resources, some particularly helpful for the behavior topic are:
- Tips to meet daily dementia behavior challenges
- Caring for Alzheimer’s: Difficult Behaviors
- Unusual behaviours: This gives links to pages with discussions on various types of worrisome behaviours.
- 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, click here
The following books have tips that may help caregivers understand changed dementia behaviors and get tips on how to handle them. 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.
This book is an excellent day-to-day reference to have. Read about the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, view the title on Amazon.in or any other vendor.
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 behavioural symptoms and how to cope with them. It can form a very good starting point for caregivers looking for ways to understand and cope with changes that dementia brings. Check out the paperback version/ read reviews/ look inside the book at Amazon.com, or, if you are in India, view the title on Amazon.in or Flipkart or any other vendor.
This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: Amazon.com or Amazon.in.
This book is also available as a Kindle eBook, which means you can buy it online and start reading it within minutes on your laptop/ tablet/ Kindle! Read a sample/ read reviews/ buy it from: Amazon.com.
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 December, 2014]