Challenging Behaviors

Among the precipitants for nursing home placement three are in the category of troubling behaviors. These are wandering, aggression and insomnia/sundowning. All take a huge toll on caregivers in addition to being disruptive and difficult for our loved ones.

Other troublesome behaviors include: agitation, paranoia, and repetitive speech. Most of these behaviors have triggers. Many times we cannot figure out what those triggers are, but often we can if we try. Questions to ask yourself will help in sorting out those that are important, those that are just annoyances and those that really require interventions.

Did anyone get hurt or could anyone get hurt by the behavior? What happened just before she shouted at you and pushed, or before she got agitated, or wandered away? Where did it happen: at home? at a strange place? Was there a person she didn’t like or didn’t know around? All these questions are calm_scaledimportant to ask. You’ll see that oftentimes it is only in retrospect that we figure out what happened. By then it’s too late for that particular incident, but our knowledge will help with the next one. It is frustrating but true that often the solution that works today might not work in another few weeks. But it’s still important to try to:

*Stay calm
*Use a soft, low voice
*Try redirection
*Don’t take it personally
*If possible, respond to the feeling behind the behavior
*Please don’t argue
*If she needs something, try to accommodate her

Repetitive Speech
This is a common problem in people with dementing illnesses. Frankly, it is more troubling for the caregivers than the patients. During one particular phase of mom’s illness she used to ask me the same question 20 times in 3 minutes. It was annoying, but harmless. When I couldn’t take it anymore, and sometimes I couldn’t, I would leave the room for a few minutes and return with a snack or something for her to do: like shelling peas, or snapping beans. 

Triggers in this case can be: boredom, fear, frustration or anxiety. It is helpful if they are asking the same thing over and over to try to see what’s behind the query and attempt to reassure them. What to do:
*If it is not driving your crazy, try to ignore it
*If it is driving you crazy, try to ignore it
*Do not remind her that you just answered her question
*Try redirection or distraction or a snack
More than 50% of people with dementia will wander at some point. It is something that can be dangerous, no matter when or where they wander. Sometimes there are premonitory signs that something is amiss. She might seem restless, or repeatedly ask where she is and state that she wants to go home, or wants to find something (often a dead loved one) or seems bored. They are searching for something that they cherish. Even if you are very vigilant it is likely your loved one will wander. Here are some things you can do:

*Develop a daily routine that hopefully includes some physical exercise
*Keep your loved one busy with things that make her feel useful: e.g. folding laundry, shelling peas
*If she seems distraught ask about it
*Reassure her that everything is okay
*Think about placing locks above her line of vision. Many people with dementia don’t look up
*Try adding child safe plastic covers to the door knobs
*Try putting a solid black mat just outside the doorway. People with dementia have trouble with depth perception and might see the mat as a black hole and not cross it.
*Inform your neighbors of the fact that your loved one can wander
*Enroll her in the Safe Return Program. It is very popular. For a cost, you get your loved one an personalized ID bracelet or pendant, an emergency wallet card, a response service (24-hr). This is useful for people who wander a great deal.

It is common that people with dementia become agitated. Sometimes the trigger is something trivial, sometimes something large, and often we have no idea what it is. Feelings of confusion, fear, inability or loss of control often precipitate a feeling of agitation. 

It helps tremendously to pay attention to what occurs before and after these troublesome occurrences. Sometimes the triggers are simple to identify like too much noise, or a strange place or person. Hospitalizations or new environments are likely to set off our loved ones because they are confused and cannot make sense of or sort out what is happening.

Once my cousin was visiting my mom. They had not seen each other in at least 10 years and had virtually no phone contact  or correspondence prior to the visit. My cousin’s mom was my mom’s sister and had been dead for more than 50 years. In the middle of the visit my mom suddenly became very agitated got up and left the room, asking in a too-loud voice, “when is she leaving?”. It was early in my care-giving and I was very embarrassed for my mom and for me. I didn’t know what to say, and my cousin who lived 4 hours away left shortly thereafter, never to return. It took me a long time to figure out what had happened. Many months later, I realized that my mom thought my cousin was her dead sister (there was a close resemblance) and had become frightened. So in this case, it was an unusual confluence of a ‘strange’ person (no contact for 10 years) yet hauntingly familiar (looked like mom’s sister). Had I known what I knew later I could have reassured my mom and also explained things to my cousin, saving us all from embarrassment. Again it’s important to:

*Stay calm
*Reassure her that everything is all right
*Go to a quiet place if where you are is too noisy
*Check to make sure she’s not hungry or thirsty or needs to use the bathroom
*Make sure she’s not in pain, or that her clothes aren’t pinching or hurting her
*Try to understand what is going on. Even if you cannot figure out the precipitant, show sympathy with her worry. It helps for her to know you understand the feelings she is having
*Use a nice quiet voice and offer comforting words: “You are safe”, I’m sorry you are upset”, “I am here with you”
*Try distraction with a snack or an activity

angry_scaledAggression and Anger
This category includes both physical and verbal aggression. And sometimes it’s easier to figure out why your loved one is angry or acting aggressively than it is to figure out why he wanders. Often it is some inadvertent ‘misstep’ of the caregiver or some problem in the immediate environment that results in an aggressive outburst.

What sets some people off when they are demented, might have been balm to them years before. My mom always loved to have many guests in the house, but as she became increasingly demented, the more people in the house, the more confused and distraught she became. So, too much noise or too many people can result in angry outbursts, verbal abuse or even physical aggression. A changed environment or even something as simple as approaching from behind can result in outrage.

Joanne Coste in her excellent book Learning to Speak Alzheimer’s, describes a scene where a patient was sitting quietly watching birds at the bird feeder outside her window. It was lunchtime and her caregiver didn’t want to disturb the calm and quiet. She approached her charge from behind and put down the bowl of soup and quietly told her that her soup was there to eat. The patient exploded out of her chair, threw the hot soup on the caregiver and shouted that she was going to call the police and told the woman to leave.

What had happened? The caregiver made the mistake of not approaching from the front, scared the woman and the outburst ensued. Thankfully the caregiver did not get angry or take it personally. Nor did she demand an explanation. She was smart enough to not only keep her distance, she actually retreated and left to go to her car where she changed her sweater. A short time later she rang the doorbell and introduced herself. Her patient had completely forgotten the incident and invited her in for tea. She never again approached her patient other than from the front.

It is very hard to remain rational when someone is angry and aggressive, but here are some tips to help:
*Stay very calm. Go to that Zen place if you have one
*Respect personal space. It might save you from an injury
*Use a soft voice, or say nothing
*Try not to look upset, even if you are
*Give her some time, like in the case above
*Try again (offer the soup later and approach from the front when she is ready).

Paranoia and Suspicion
It is very common for people with Alzheimer’s dementia to be suspicious and accusatory. Frequently the partner or caregiver will be accused of theft, adultery (partner), lying or cheating.

Commonly, our loved ones will hide some precious object (jewelry) or even not-so-precious object. Then when she cannot find it (and she really cannot remember where she put it) she seeks to blame whoever is standing right there. Also frequent is to misinterpret what she is hearing. Not recognizing where she is might lead to expressions of paranoia or suspiciousness. Remember that no matter how outrageous the accusation what they are experiencing is very real to them. 

 Like with many of the other challenging behaviors:
*Try not to take this personally. It’s hard when you are being unfairly accused of something but try to remember this is the diseased brain talking.
*Don’t argue
*Listen to the feelings behind the words and try to express love and concern
*Give a simple response (“Let’s try to look for your pin together”)
*Try to have duplicates of the repeatedly lost item (if cheap and easy to do)
*Redirect if you can and Sundowning
Sleep issues are almost universal in people with dementia. It is very important to address this because insomnia is very disruptive to caregivers and then to the loved one. If the caregiver is chronically under-slept the caregiving will suffer. In fact this is one of the issues that, if not addressed leads to placement.  

Insomnia is often due to a variety of factors, but the most likely cause and the least likely to change is intrinsic alterations in the person’s biological clock that confuse day and night. Even so, it is important to try to avoid the known factors that can contribute to insomnia. So make sure that she doesn’t get any caffeine past noon time, this includes not just coffee but all caffeinated beverages. Also try to prevent too many or too long naps or too much daytime stimulation.

Sundowning is another issue which ties in with insomnia and may help set up the circumstances for sleeplessness to occur. Patients with dementia do not perceive things properly (especially visually) and the shadows that occur as twilight nears can be alarming to them. For that reason, it is important to pull down shades or pull the curtains late in the day and to make sure that the room she is in remains well-lighted. This will minimize unusual light and shadow patterns that can cause confusion. 

Try these things to minimize sundowning and insomnia:
*Make the evening hours before bedtime calm and relaxing
*Make sure the room is well lighted and shadows are minimized
*Hold all caffeine after noon
*Make sure she’s not hungry or thirsty before bedtime
*Keep a nightlight in her room and/or bathroom and in the places between bed and bathroom
*Ask another family member to spell you if you aren’t getting sleep.
*As a last resort, talk to her doctor. This is the last resort because most sleep medications have a deleterious effect on our demented loved ones and will make their daytime life more confusing and disconcerting.

patience_scaledGeneral Rules for all the disruptive behaviors
*Try to stay calm
*Use a soft and low voice
*Approach from the front (always)
*Reassure her that everything is okay
*Try to address the feeling of distress behind the behavior
*Don’t take it personally
*Keep her environment consistent if possible
*Loud noises and lots of visitors should be kept to a minimum
*Try to be patient
*Try to be flexible

For more information about challenging behaviors check out these resources.