Mid-to-late stage dementia and Alzheimer’s patients often present challenging behavior problems for their caregivers. The anger, sadness, paranoia, confusion, and fear they’re experiencing can result in oppositional, aggressive and sometimes violent speech or actions. Read about some things people with dementia say, understand why they’re saying it and learn which strategies are most effective in dementia behavior management.
Communication difficulties can be one of the most upsetting aspects of caring for someone with Alzheimer’s disease or some other type of dementia—and it’s frustrating for the patient as well as for loved ones. Although it can be hard to understand why people with dementia they act the way they do, the explanation is attributable to their disease and the changes it causes in the brain. One concrete step you can take to make communication easier is to familiarize yourself with some of the common situations that arise when someone has dementia, so that if your loved one says something shocking or puzzling, you’ll know how to respond calmly and effectively.
Common Situation #2: Aggressive Speech or Actions
Examples: Statements such as “I don’t want to take a shower!”, “I want to go home!”, “I don’t want to eat that!” may escalate into aggressive behavior.
Explanation: The most important thing to remember about verbal or physical aggression, says the Alzheimer’s Association, is that your loved one is not doing it on purpose. Aggression is usually triggered by something—often physical discomfort, environmental factors such as being in an unfamiliar situation, or even poor communication. “A lot of times aggression is coming from pure fear,” says Tresa Mariotto, Family Ambassador at Silverado Senior Living in Bellingham, WA. “People with dementia are more apt to hit, kick, or bite” in response to feeling helpless or afraid.
Ann Napoletan, who writes for Caregivers.com, is all too familiar with this situation. “As my mom’s disease progressed, so did the mood swings. She could be perfectly fine one moment, and the next she was yelling and getting physical. Often, it remained a mystery as to what prompted the outburst. For her caregivers, it was often getting dressed or bathing that provoked aggression.”
DO: The key to responding to aggression caused by dementia is to try to identify the cause—what is the person feeling to make them behave aggressively? Once you’ve made sure they aren’t putting themselves (or anyone else) in danger, you can try to shift the focus to something else, speaking in a calm, reassuring manner.
“This is where truly knowing your loved one is so important,” says Ann Napoletan. “In my mom’s case, she didn’t like to be fussed over. If she was upset, oftentimes trying to talk to her and calm her down only served to agitate her more. Likewise, touching her–even to try and hold her hand or gently rub her arm or leg–might result in her taking a swing. The best course of action in that case was to walk away and let her have the space she needed.”
DON’T: “The worst thing you can do is engage in an argument or force the issue that’s creating the aggression,” Ann says. “Don’t try to forcibly restrain the person unless there is absolutely no choice.” Tresa Mariotto agrees: “The biggest way to stop aggressive behavior is to remove the word ‘no’ from your vocabulary.”
Common Situation #2: Confusion About Time or Place
Examples: “I want to go home!” , “This isn’t my house.” , “When are we leaving? Why are we here?”
Explanation: Wanting to go home is one of the most common reactions for an Alzheimer’s or dementia patient living in a memory care facility. Remember that Alzheimer’s causes progressive damage to cognitive functioning, and this is what creates the confusion and memory loss. There’s also a psychological component, says Tresa: “Often people are trying to go back to a place where they had more control in their lives.”
DO: There are a few possible ways to respond to questions that indicate your loved one is confused about where he or she is. Simple explanations along with photos and other tangible reminders can help, suggests the Alzheimer’s Association. Sometimes, however, it can be better to redirect the person, particularly in cases where you’re in the process of moving your loved one to a facility or other location.
“The better solution is to say as little as possible about the fact that they have all of their belongings packed and instead try to redirect them–find another activity, go for a walk, get a snack, etc.,” says Ann Napoletan. “If they ask specific questions such as ‘When are we leaving?’ you might respond with, ‘We can’t leave until later because…’ the traffic is terrible / the forecast is calling for bad weather / it’s too late to leave tonight.”
“You have to figure out what’s going to make the person feel the safest,” says Tresa Mariotto, even if that ends up being “a therapeutic lie.”
DON’T: Lengthy explanations or reasons are not the way to go. “You can’t reason with someone who has Alzheimer’s or dementia,” says Ann. “It just can’t be done.” In fact, says Tresa, “A lot of times we’re triggering the response that we’re getting because of the questions we’re asking.”
This was another familiar situation for Ann and her mother. “I learned this one the hard way. We went through a particularly long spell where every time I came to see my mom, she would have everything packed up ready to go–EVERYTHING! …Too many times, I tried to reason with her and explain that she was home; this was her new home. Inevitably things would get progressively worse.”
Common Situation #3: Poor Judgment or Cognitive Problems
Examples: Unfounded accusations: “You stole my vacuum cleaner!”
Trouble with math or finances: “I’m having trouble with the tip on this restaurant bill.”
Other examples: unexplained hoarding/stockpiling, repetition of statements or tasks
Explanation: The deterioration of brain cells caused by Alzheimer’s is a particular culprit in behaviors showing poor judgment or errors in thinking. These can contribute to delusions, or untrue beliefs. Some of these problems are obvious, such as when someone is hoarding household items, or accuses a family member of stealing something. Some are more subtle, however, and the person may not realize that they are having trouble with things that they never used to think twice about.
According to Ann Napoletan, “There came a time when I began to suspect my mom was having problems keeping financial records in order. At the time, she was living independently and was very adamant about remaining in her house. Any discussion to the contrary, or really any comment that eluded to the fact that she may be slipping, was met with either rage or tears. It was when she asked me to help with her taxes that I noticed the checking account was a mess.”
DO: First you’ll want to assess the extent of the problem. “If you’re curious and don’t want to ask, take a look at a heating bill,” suggests Tresa Mariotto. “Sometimes payments are delinquent or bills aren’t being paid at all.” You can also flip through their checkbook and look at the math, or have them figure out the tip at a restaurant.
The Alzheimer’s Association says to be encouraging and reassuring if you’re seeing these changes happen. Also, you can often minimize frustration and embarrassment by offering help in small ways with staying organized. This is what Ann did for her mother: “As I sifted through records to complete her tax return, I gently mentioned noticing a couple of overdraft fees and asked if the bank had perhaps made a mistake. As we talked through it, she volunteered that she was having more and more difficulty keeping things straight, knew she had made some errors, and asked if I would mind helping with the checkbook going forward. I remember her being so relieved after we talked about it.” From there, over time, Ann was gradually able to gain more control over her mother’s finances.
DON’T: What you shouldn’t do in these circumstances is blatantly question the person’s ability to handle the situation at hand, or try to argue with them. “Any response that can be interpreted as accusatory or doubting the person’s ability to handle their own affairs only serves to anger and put them on the defensive,” says Ann.
Are you a caregiver or family member of someone with dementia? Do any of these situations sound familiar? We want to hear your stories, too—please feel free to share them in the comments.