Handling Behavior Challenges
A major challenge faced by caregivers is that dementia patients often behave in ways that are harmful to them and to the people around them. Dementia patients behave in strange ways because they do not understand what is happening, and/ or their needs are not met and they cannot know/ communicate what they need.
To achieve an overall improvement in the dementia patient’s behavior, caregivers must build a basic toolkit of skills and also create around the patient an environment that is likely to keep the patient satisfied and happy. When behavior problems occur, the caregiver must understand the reasons and make appropriate changes. This page discusses a possible approach.
A note: The methods discussed here do not include medication. If the patient’s behavior is unmanageable and harmful, please consult your doctor.
To establish an understanding and enriching environment for the patient
- Skills to communicate with/ respond to the patient, a basic toolkit.
- Things that can enrich the patient’s life and reduce the chances of unhappiness
When a patient’s behavior worries you: In case the patient behaves in ways that are hurtful/ damaging to the patient or others, use a comprehensive approach.
- Ensure your mindset is calm and positive
- Consider: Is the behavior a “behavior of concern”?
- Find the trigger that makes the patient exhibit this behavior of concern.
- Prevent the trigger, or modify the patient’s response
Finally, learn more about skills you need as caregivers, and about specific behavior problems (such as wandering). Or share experiences with other caregivers. Click here for some links.
Establish an understanding and enriching environment for the patient
Skills to communicate with/ respond to the patient, a basic toolkit.
One of the most common problems caregivers face is that they feel the patient does not understand. When caregivers try to explain to them, they do not understand what the problem is, and continue to do what they were doing. Or they get agitated and become even more difficult to handle. Caregivers feel helpless, frustrated, angry, and depressed.they cannot make the patient understand. Here are some basic skills to build for caregiving.
- Communicating with dementia patients: We need to speak clearly, using small, simple sentences, and after establishing eye contact with the patient. We should not be agitated, frustrated, or impatient, or the patient will respond to our emotion and not our words. If giving instructions, we should give only one instruction at a time. If giving choices to the patient, we should not confuse the patient with too many hurriedly uttered choices, or with open-ended questions. Give only two clear objects to choose from, if a choice needs to be given.
- Distraction: Sometimes, when patients are agitated and keep repeating themselves out of a sort of habit, a simple distraction may work, breaking the train of thought of the patient.
- Validation: Understanding the underlying concern of the patient and validating it through clear statements can make a patient feel understood and respected.
Things that can enrich the patient’s life and reduce the chances of unhappiness:
Help the patient adjust better and feel independent and competent:
- Add things for “reality orientation” (prominent, easy to read calenders, clocks)
- Aids to remain independent/ remember things easily (medicine pill boxes, signage on doors, grab bars in toilets, night lights)
- An environment that is not threatening or overwhelming (avoiding dark/ contrasting colors, mirrors, clutter)
Also consider:
- Aromotherapy
- Music
- Reminiscence Therapy (having photographs, movies, books that remind patient of old, pleasant times)
- Yoga and meditation
- Painting
- Pet Therapy
- Doll Therapy
Not all these techniques would be effective for every patient; some may even worsen the situation. For example, someone who hates pets would not be a good candidate for pet therapy. Pick and choose what might work 
When the patient’s behavior worries you
In case the patient behaves in ways that are hurtful/ damaging to the patient or others, use a comprehensive approach:
Ensure your mindset is calm and positive:
You can do this by remembering:
-
The nature of dementia: Too often, overwhelmed caregivers feel frustrated that the patient is not responding to their requests to calm down or desist from some harmful behavior. They may feel the patient is being stubborn, or is not listening or paying attention. They may also compare this situation with another where the patient behaved reasonably, and feel that the patient is capable of behaving better and is deliberately being troublesome. If the caregiver feels this way, his/ her energy levels would automatically dip, and the task will become even more unpleasant.
The fact is, a dementia patient suffers from cognitive decline and “challenging” behavior is a response of such a person to a situation the person cannot adequately handle. Dementia patients may behave better on some days and worse on others. The reason is not that they are pretending or that they are stubborn; such swings in behavior and unpredictable mood swings are a characteristic of dementia.
- Maybe you can understand the patient’s perspective: Your advantage is that your brain is intact and functioning better that that of the patient. So, maybe you can understand why the patient is reacting to his/ her current situation by behaving in a particular way. For the patient, whose brain is damaged, it is much more difficult to understand your objections/ agitation/ concern at his/ her behavior.
- This challenging behavior is the patient’s way to communicate: When a baby is hungry, she cries. We don’t get upset; we know that this is the way the baby communicates her need. While dementia patients are older and can sometimes communicate well enough, at times they are unable to draw upon things we take so much for granted. They are unable to find the words and sentences to explain what they want. They are not even clear about what they want. They are facing a situation they find difficult and doing whatever they can do to handle it.
Consider: Is the patient’s behavior a behavior of concern?
Sometimes we caregivers 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 want to dessert before the appetizer. Such behavior, while odd, does not harm either the patient or anyone else.
Dementia patients act odd in a myriad number of ways. As caregivers, we cannot 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)
- Sleep disturbance
- Hallucinations or delusions
- Incontinence
- Poor personal hygiene (brushing teeth, not bathing properly)
- Eating difficulties
- Anxiety, clinging
- Apathy, withdrawal
- Repetitiveness (physical actions, verbal)
(see also my blog entry discussing this in more detail)
Find the trigger that makes the patient exhibit this behavior of concern.
The patient’s 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.>
- 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 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 someone who doesn’t quite recognize the people around, cannot follow the fast conversation, and is not sure where the bathroom is. All this is easy to see 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.
An open mind and creative thinking is often helpful in identifying possible triggers. Attending support group meetings or meeting other caregivers also helps, because we get ideas when we share incidents.
Prevent the trigger, or modify the patient’s response
Once the trigger is understood, the approach to reducing the troublesome behavior can be derived.
Sometimes, it is possible to reduce or remove the trigger. If the patient is getting agitated every time she passes a full-length mirror (because of the strange old person she sees in it), we can remove the mirror. If a particular dish makes her get upset, we can stop offering it to her.
Often, we may need creative solutions to help the patient stop doing whatever is harmful. 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 
Learn more:
Get more tips at Alzheimer’s Association’s page on behaviors. ADEAR also has a resource list for caregivers handling behavior problems.
Also very useful for practical ideas are communities where caregivers share problems and tips. Alzheimer’s Association has a community you can join, click here. There are a number of good communities where you can make friends with others in a similar situation, and learn from each other. Many caregivers also blog about their experiences and share experiences and tips. A well-known blog for Alzheimer’s is the Alzheimer’s Reading Room.