This article was originally posted on APlaceForMom.com
Mid-to-late stage dementia often presents a variety of challenging behavioral problems. This discussion of common symptoms may help prepare you to effectively support a person with dementia.
Anger, confusion, anxiety, and sadness are a few of the emotional symptoms a dementia patient might experience. The overwhelming nature of these feelings often results in a range of unpredictable behaviors that requires the caregiver to be extremely patient. A dementia patient may become irritable and even belligerent, with little provocation. He or she may go in and out of being confused and disoriented, or even attempt to manipulate those around them. Struggling with communication is one of the most upsetting aspects of taking care of someone with Alzheimer’s or another type of dementia. It is especially frustrating for those living with the disease and for their loved ones. Although it can be hard to understand why a person with dementia acts the way they do, the explanation is attributable to the disease and the changes it causes in the brain.
Familiarize yourself with some of the most common symptoms of the disease and situations that may arise for someone with dementia. If your loved one seems to be having hallucinations, delusions, becoming aggressive or saying things that are shocking, you can utilize these strategies for responding calmly and effectively.
Examples: Statements such as “I don’t want to take a shower!” “I want to go home!” or “I don’t want to eat that!” may escalate into aggressive behavior.
It is not uncommon for a dementia patient to engage in aggressive and sometimes violent actions toward another resident or a person taking care of them. It is important to be aware of this type of behavior to mitigate the risk to yourself and others. The Alzheimer’s Association states that the most important thing to remember about verbal or physical aggression is that your loved one is not giving you that treatment on purpose. Aggression is usually triggered by something, not just a desire to cause you pain. Outside factors such as physical discomfort or pain, being in an unfamiliar environment or situation, and even poor communication can all trigger aggression. “A lot of times, aggression is coming from pure fear,” says Tresa Mariotto, Family Ambassador at Silverado Senior Living in Bellingham, Washington. “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 with care to aggression caused by dementia is to try to identify the cause—what is the person feeling to make them behave aggressively? Are they in pain, or is their mind just wandering? In the brain of a person with dementia, fear and anxiety can feel overwhelming and lead to extreme behavioral symptoms. Once you feel confident the patient isn’t putting themselves (or anyone else) at risk, 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 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,” Napoletan says. “Don’t try to forcibly restrain the person unless there is absolutely no choice.” Mariotto agrees: “The biggest way to stop aggressive behavior is to remove the word ‘no’ from your vocabulary.”
Examples: Statements such as “I want to go home!” “This isn’t my house” “When are we leaving?” or “Why are we here?”
Expressing a desire to go home is one of the most common examples of dementia behavior for those living in a memory care facility. The affected person may have hallucinations or delusions about where he or she is. Remember that Alzheimer’s and dementia disease cause progressive damage to cognitive brain functioning, and this is what creates the confusion and memory loss symptoms. When confusion is present, it can create even more anxiety. The combination of the two feelings is hard to manage for the patient.
Mariotto states that there is also a psychological component to acknowledge:
“Often, people are trying to go back to a place where they had more control in their lives.”
DO: There are a few effective ways for those who care for loved ones to respond to indications that they are confused about where they are. The Alzheimer’s Association suggests communicating with simple explanations, along with photos and other tangible reminders to help alleviate the patient’s confusion. In other cases, it may be better to redirect the person. This measure can be taken if you’re in the process of moving your loved one to a facility or other location. You don’t want them wandering off, but you can care for their needs with some creative thinking.
“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 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 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. Mariotto reiterates that “It just can’t be done.” “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.”
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 include unexplained hoarding or stockpiling and repetition of statements or tasks.
The deterioration of brain cells caused by Alzheimer’s disease leads to behaviors reflecting poor judgment and errors in thinking. Your mom may experience hallucinations, delusions or believe untrue things. Her mind may begin wandering more and more frequently. Some of these symptoms are obvious and apparent, such as hoarding household items or accusing a family member of stealing. Some are more subtle, which make it difficult for your mom to realize that her brain is having trouble with even the simplest of concepts.
According to 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 alluded 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 Mariotto. “Sometimes payments are delinquent, or bills aren’t being paid at all.” You can also flip through your loved one’s checkbook and look at the math. Additionally, you can have them figure out the tip at a restaurant. The Alzheimer’s Association states the importance of being encouraging and reassuring if you see these changes happen. Also, a caregiver can often minimize frustration and embarrassment by offering subtle help, such as with organization. This is what Napoletan 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, Napoletan 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 take care of the situation at hand or try to argue with them. You don’t need to risk alienating your loved one with dementia. “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 Napoletan.
Examples: Inventing truths to achieve an outcome: “You told me I could drive to the store.” Bargaining: “If you let me drive to the store, I will take my medicine.”
Alzheimer’s disease is a form of dementia that creates significant and sometimes extreme behavioral changes. A person with Alzheimer’s may display selfish, entitled and manipulative treatment of others.1 These behaviors can quickly wear down a caregiver or family member.2
DO: While this is challenging, it is important to remember these behaviors are symptoms of a diseased brain. Many patients with severe dementia have lost the part of their brain functioning that has control over emotions and social behaviors. The person may have lost the ability to distinguish between truth and untruth, and may no longer have a sense of morality around lying. It is helpful to distract from the manipulative treatment you are receiving with a change of subject or light humor: “Well, we’ll see about you driving to the store! But let’s sit at the piano now and try to remember that song you like.” This set of symptoms can feel difficult for a caregiver. If you care for a person with dementia, and you are feeling resentment, anxiety or depression, it may help to obtain support from a supervisor, counselor or family member to gain some clarity.
DON’T: It’s not helpful to argue with your family member about whether he or she is telling the truth or not. Don’t bring up past events to prove or disprove statements. Don’t accuse him or her of lying or manipulation.
Are you a caregiver or family member of someone with dementia? Do any of these situations sound familiar to you? We want to hear your stories — share them with us in the comments below.
1Wehrwein, Peter. (2011). Alzheimer’s Disease in Its Later Stages: Some Advice for Caregivers. [Blog post]. Retrieved from https://www.health.harvard.edu/blog/alzheimer’s-disease-in-its-later-stages-some-advice-for-caregivers-201110063560
2Wegerer, Jennifer. (2019). How to Avoid Caregiver Fatigue. [Blog post]. Retrieved from https://www.aplaceformom.com/blog/2013-01-09-habits-for-happy-caregivers/
Dementia Care Dos & Don’ts: Dealing with Dementia Behavior Problems posted by Sarah Stevenson
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