Dementia patients sometimes act in strange ways, exhibiting repetitiveness, extreme anger and agitation, or paranoia, so accusing people of crimes. They even get violent and may hit people around them. The term “challenging behaviour” or “difficult behaviour” is often used for this, and caregivers get stressed and overwhelmed trying to cope with it.
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. Consider tools like validation, distraction, and fiblets to bring the situation under control. Keep yourself and patient safe.
Difficult 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 are also unable to cope with their own emotions, and may become abusive and aggressive, and hit people. They may show disinhibition or do socially unacceptable things.
The best way to handle challenging behaviour is to try and prevent it. We can try to reduce the frustration that triggers it, such as adjusting the home for the patient, communicating effectively, helping the patient with activities, and having a daily routine that allows the patient to feel competent, secure and emotionally fulfilled. Even so, behaviour problems may occur, and we need to notice them before they reach “catastrophic” levels. We also need to understand the triggers so that we can try to avoid them in future.
A note: The methods discussed here do not include medication. If the patient’s behavior is unmanageable and harmful, please consult your doctor.
Here is a comprehensive approach for handling challenging behaviour.
- Ensure your mindset is calm and positive
- 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
- 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.
- We are fortunate that our brains are working, and so we can try to understand the patient: Our advantage is that our brain is intact and functioning better that that of the patient. Let us, therefore, try to understand why the patient is reacting to the current situation in this way.
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 not normal. 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
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.
- 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
- Distraction works sometimes if the patient is not too agitated, and if the emotional need has been pacified.
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.
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: Almost all these sites/ resources contain tools and tips for handling difficult behaviour. Many sites have downloadable files with information. The following are particularly helpful:
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
- A discussion on fiblets and therapeutic lies to handle challenging dementia behaviors