Caring for someone who has dementia can be a full-time job, often with demands that seem impossible to meet. When dementia causes a person to lose cognitive function and develop personality changes, the person affected by dementia often develops difficult and challenging behaviors that can cause stress on themselves and those caring for them.

These behaviors can vary widely, including such things as depression, wandering, screaming, hitting, resisting care and many others. These behaviors are often referred to as BPSD — behavioral and psychological symptoms of dementia. For the family and care providers, BPSD can become overwhelming. So much so, in fact, that these very behaviors often cause care providers to choose to utilize the services of a memory care community to provide for their care rather than to continue to do so in the home.

Individuals with dementia can have difficult and unpredictable behaviors. Some people with dementia exhibit anxious or aggressive behaviors. Others ask the same questions over and over. Some scream and yell. These behaviors can be challenging and problematic to deal with, causing tension and frustration for everyone involved. It’s important to remember to stay calm during these situations. The dementia patient is not acting out of malice and they are not trying to be difficult. Instead, they may be trying to communicate with you the only way they know how.

Care Goals

In an AMA Journal of Ethics article, the authors state that the care goals for the person with dementia are five-fold. Care goals should be put in place to help the person with dementia to:

1. Have a life with pleasure
2. Have feelings of being safe
3. Have feelings of being comfortable
4. Live with limited amounts of stress and positive stimulation
5. Feel that they have a sense of control

As you care for someone with dementia and try to determine how to best deal with their difficult behaviors, it would be wise to always keep these care goals in mind to achieve the best possible outcome.

Behavior Changes

Behavior changes can be one of the most challenging aspects of dementia. It can be difficult to know what to expect from one day to the next, both for the individual with dementia and for their care providers.

It’s important to remember that the person with dementia isn’t deliberately choosing to be difficult. Their difficult or challenging behavior is often the result of them trying to communicate a need they have — something is causing them to feel confused or distressed, and they are attempting to make sense of what is happening.

It’s at these times that we need to step back and look at the causes of the behavior — the triggers — to determine what the person’s needs are (think of the five care goals) to minimize any difficult or challenging behaviors.

Steps to Manage Difficult Behavior

We all have the same basic needs; however, someone with dementia may not be able to recognize their needs or know how to satisfy those needs. They are also not always able to easily let someone know they have a need that is not being met. When this happens, they may act out with difficult or challenging behaviors in their effort to communicate their need.

Just as a baby cries to let its mother know that a need is not being met, a person with dementia tries to find ways to communicate their needs when they can’t find the words to express themselves. Oftentimes, these difficult behaviors are an attempt to communicate their needs.

In order to identify common dementia-related behaviors and their possible origins, go through these three steps and ask yourself:

1. Analyze their Behavior

• What was the specific behavior?
• Was the behavior harmful to them or others?
• Can you identify its trigger?
• What happened right after the behavior?
• Could pain be causing the behavior? Could what they were doing cause pain?
• Could the behavior be caused by illness or medications? A visit to their healthcare professional may be required to rule out illness or medication issues.
• Is the behavior caused by Sundown Syndrome? (more on sundown syndrome in a section below)

2. Look for Possible Solutions

• Are their needs being met?
• Does a change in their environment or surroundings make them more comfortable? Or does the change make things worse?
• How can you change your response to their actions for a more favorable outcome next time?

3. Experiment with Different Responses

• Did the new response make things better? Or worse?
• Can you think of any additional ways to respond that you might try in the future?

Behaviors and Management Tactics

Sudden behavior changes are often the result of physical health problems — especially when the behaviors are agitation, confusion and distress. Sudden behavior changes warrant a visit to their healthcare professional. Once a doctor has ruled out all medical reasons for their behaviors, it’s time to pull out your behavior management toolbox and consider which tactics can best be used to manage behaviors.

There are certain actions you can take that often help to reduce difficult behaviors. It’s best to try these non-drug actions before resorting to pharmaceuticals to manage and alter behaviors. Medications have side effects that can create other difficulties, including behavior problems.

These tactics include:

• Encourage them to take part in activities that help them feel useful or that they enjoy
• Encourage and help them to stay in touch with people who are important to them — family and friends
• Create and establish daily routines. Establish routines throughout the day that include spending quiet, relaxing and peaceful moments with them, such as having a cup of tea and chatting about things that are important to them.
• Create a comfortable and soothing environment — improve lighting to eliminate shadows; reduce clutter and noise. Make sure the temperature is comfortable, especially where they will be sleeping. If something in their environment triggers challenging behaviors, eliminate or change it.
• Keep comforting and personal objects in close proximity to them, making it easy for them to reach for comfort when they need it
• Don’t argue with them. If they say they need to go to work, distract them by asking them to help you do something before they leave or have them tell you about a project from work. If they think they need to go pick up kids from school, ask them to tell you about the kids.
• Involve the senses. Try aromatherapy or massage. Essential oils can be used to enhance mood and to reduce depression, anxiety and stress. Try light therapy, which has shown to reduce depression and agitation in persons with dementia. Involve them in an art activity such as coloring. Try pet therapy or doll therapy.
• Is the behavior something you can ignore? It may not be how you would do something, but if everyone is safe and their needs are being met, can the behavior be ignored to prevent them from being frustrated even further, leading to even more difficult behavior? For example, if they insist on wearing socks that don’t match, or socks that are inside out, does it really matter?

When interacting with someone who has dementia, or you need to schedule activities and appointments, consider the following:

• Consider the time of day. They probably function better in the morning. Some individuals may also experience sundowning in the afternoon. Be sure to schedule appointments and activities when they are rested and at their best to ensure the best outcome.
• Consider your communication style. Make sure your instructions are clear and easy to understand. Don’t ask more than one question at a time, then give them time to respond.
• Remain calm and speak slowly and softly with a calm voice and tone. Don’t get upset. Be reassuring and positive. The person with dementia will pick up on your stress and irritability which will increase their negative behaviors.
• Focus on feelings, not actions. Don’t focus on a specific detail or action; instead, consider how they are feeling, looking behind their actions or words.

Now, let’s look at some common dementia-related behaviors and management tactics for those behaviors.

Confusion and Forgetfulness

Dementia often causes confusion and forgetfulness. They may not recognize family members and friends. They may forget that they just ate and don’t need to eat again. They can become confused about any number of things, even how to use a toothbrush or a fork.

What can you do?

• Don’t take it personally. They didn’t choose to forget who you are and how much you mean to them. The disease has robbed both of you. They will, however, respond appreciatively to your warmth, love and support.
• Remain calm, even if you are in pain because they don’t remember you. Talking to a friend or family member about your pain may be helpful.
• Keep explanations simple and brief. Don’t overwhelm them with information.
• Provide suggestions instead of corrections. Avoid corrections or explanations that sound like a scolding. Try something like, “Isn’t that your friend, Jessica?” or “I think she’s your granddaughter, Emily,” or “I think it’s called a toothbrush.”
• Treat them respectfully. If you have to explain something to them, do so with respect. Treat them as an adult, not a child.

Aggression and Anger

Aggression and anger can be exhibited verbally (such as shouting, screaming or name-calling) or physically (such as pushing, pinching or hitting). You want to try to determine what’s causing the aggression and anger and then, if possible, try to find ways to keep it from happening again. Aggressive behavior can be caused by many different situations, including physical discomfort, loud noises, loud and busy environments and communication difficulties.

What can you do?

• Determine if they are in pain. For someone with dementia, pain can be a trigger for aggression and anger.
• Consider their environment. Are they overly tired or stimulated? Are they hungry or thirsty? Are there loud noises, physical clutter or an overactive environment that could be causing them to be overstimulated?
• Try to identify the trigger. What happened right before the anger and aggressive behavior were exhibited?
• Focus on their feelings, not the behavior. Look for the reason for their anger and aggression.
• Remain calm and speak calmly, slowly and softly. Be reassuring and positive. If you become agitated, they’re likely to become even more agitated themselves.
• Use distraction. If an activity or circumstance causes aggression or anger, divert their attention to something entirely different. Soft music, massage and exercise can be calming and soothing. Or try something that you know they always find pleasurable.
• Give yourself a break. If possible — meaning, they are in a safe environment — step away from the situation and give yourself time to collect your feelings and thoughts.
• Ensure everyone’s safety. If you are unable to calm them, be sure to reach out for assistance. Don’t hesitate to call 911 to keep everyone safe; however, be sure to let 911 responders know that the person has dementia and that the dementia causes them to act out aggressively.

Agitation, Restlessness or Anxiety

Dementia can cause agitation, restlessness or anxiety for a variety of reasons. Learning what triggers these emotions can often be seen by considering what happened just prior to them becoming agitated, restless or anxious, looking at their environment, considering the time of day and looking for potential sources of hunger, pain, need for sleep, etc.

What can you do?

• Listen for frustration. Do they sound frustrated? Can you determine what might be causing their frustration? Show them empathy and understanding, even if you can’t determine the source of their feelings.
• Determine if they’re uncomfortable or in pain. Pain can be a trigger for agitation and anxiety, even emotional pain such as being in an uncomfortable situation. Do they have a urinary tract infection? Have they been hurt or injured? Could a medication be making them uncomfortable? Consider also, constipation, depression, arthritis and dental issues. Is their environment too warm or cold? Are there shadows in the room that might make them feel uneasy?
• Do they have a basic need that is not being met? Are they hungry, thirsty, have a soiled/wet adult brief or need to use the toilet?
• Be calm and reassuring. Use a calm voice and calming phrases. Be there for them.
• Decrease distractions and noise
• Distract them with calming activities.Involve them in relaxing activities such as listening to music, giving them a hand or foot massage or another activity they find relaxing. Give them something to occupy their hands, like a soft toy or worry beads. If they like to tinker, have a tinker project for them to work on.
• Use up nervous energy. Take them for a walk, go for a car ride (and a dish of ice cream) or enjoy stretching exercises with them. Having a walk built into their daily routine may be beneficial and it may help them sleep better too.
• Provide them with a “rummage box.” Fill a box with meaningful and interesting objects that they can sort through and reminisce.
• Petting a dog or cat can reduce agitation and anxiety for some

Repetitive Behaviors

Someone with dementia may repeat the same thing or ask the same question over and over again or they may do a specific action over and over. They may pace back and forth. They may undo something that has just been done. When actions such as these occur, the person is most likely looking for familiarity, security or comfort.

What can you do?

• Search for the trigger of the repetitive behavior. What happened right before the repetitive behavior started?
• Respond to how they are feeling, not to what they are doing
• Look for a common theme to their questions. This may help you get to the bottom of what is really bothering them.
• Remain calm and patient. Reassure them with a gentle touch and a calm voice. Generally, repetitive behaviors are innocent and unharmful; however, they can be stressful for the care provider.
• If possible, convert the behavior or action into an activity. If they are rubbing their hand across the table, give them a cloth and ask them to help you dust the furniture. Give them something to occupy their hands, like a soft toy or worry beads. If they like to tinker, have a tinker project for them to work on.
• Patiently answer a question each time it is asked. Impatiently answering a question that they think they’ve only asked once is not productive. They may not remember having asked; they will, however, notice your impatience which will add to their distress. After once again answering the question, divert their attention to something else.
• Get them involved in an activity. They may be bored and are looking for a way to fill their time. Help them find an activity they will enjoy.
• Use memory aids. Things like post-it notes, clocks, photographs and calendars can be used to help them find answers for themselves.
• Provide them with a “rummage box.” Fill a box with meaningful and interesting objects that they can sort through and reminisce.

Shouting and Screaming

It can be very overwhelming and distressing when someone with dementia is shouting or screaming. This behavior can be indicative of many different scenarios which may include:

• They’re frustrated because they’re having problems communicating
• They’re feeling discomfort or pain
• They are anxious, bored or lonely
• They have a need that is not being met, such as thirst, hunger or need to go to the toilet
• Their environment is uncomfortable — too hot or cold, too noisy, too dark, too busy or chaotic, etc. Shadows can cause them to see confusing or scary things that aren’t really there.
• The behavior is in response to a misperception or a hallucination

After checking and considering all the above, what else can you do?

• As you help them with activities, explain what you are doing and why. For example, as you’re helping them put on their shoes, let them know what you are doing as you are doing it. Also, talk about what you’re going to be doing that requires them to wear shoes. Be patient and give them time to process what is being said and what is happening.
• Keep them engaged in activities with others that involves their senses. Senses, especially the sense of smell, can be used to reminisce about events in their past. Have various activities available at all times, so you can just pull them out and use them quickly.

Dealing with Suspicions

People with dementia can become confused about the world around them. They may become suspicious of the actions of others. They may misplace an item and think that someone has stolen it. They may misinterpret things they see or hear. They may accuse those around them of many different actions, including infidelity, theft and other unsavory behaviors.

What can you do?

• Choose not to be offended. Listen to their grievance and try to be understanding. Reassure them and let them know you care, responding to their feelings, not their actions.
• Don’t argue with them. Give them time and space to express their thoughts. Acknowledge what they share with you.
• Provide simple explanations. Complicated answers may frustrate or confuse them.
• Distract them with a pleasurable activity
• Keep duplicate items handy. If there is an item they search for frequently, keep several of them handy. Being able to produce the item quickly will keep frustration levels low.

Wandering

Wandering and becoming lost is a common behavior, especially with Alzheimer’s disease. As they try to live out their lives, they may be attempting to go to school, go to work, pick of the kids from school or many other scenarios they’ve accomplished throughout their lives.

What can you do?

• Use activities to distract them. Keeping them busy and engaged can reduce the need or desire to wander. Enlist their help with chores they can accomplish such as folding laundry or dusting the furniture. (Keeping a basket of unfolded towels ready for use can be a lifesaver.) If they enjoy being outside, engage them in activities such as gardening or taking a walk with you.
• Keep those involved in their care informed of their tendency to wander. Let the neighbors know, as well, so that if they’re seen wandering, you can be contacted ASAP and the neighbors know to keep an eye on them in the meantime.
• Make the home safe. Add devices to the home to make it safe and limit access, such as the door guardian.

Sleep Difficulties

Dementia often negatively affects sleep cycles causing them to sleep at odd times or, sometimes, seeming to not sleep at all. Add this on top of the sleep difficulties that come with age and it can be easy to understand why individuals with dementia often struggle to get a good night’s sleep. This also plays havoc with the care provider’s ability to get a good night’s sleep as well.

What can you do?

• Make sure their sleeping area is safe and comfortable. Make sure the room is a comfortable temperature for sleeping. Use nightlights to make it safe for the times when they do get up during the night. Eliminate trip hazards, such as throw rugs and clutter.
• Develop a sleep routine. Keep the times they retire and arise consistent. Develop bedtime rituals that signal it’s time to go to sleep. Drinking a cup of herbal tea (decaffeinated) or warm milk or taking a warm bath or shower, right before bedtime may help them to relax and sleep better.
• Limit naps, especially if they have trouble sleeping through the night and keep them engaged in plenty of enjoyable activities during the day.
• Engage them in some form of physical exercise earlier in the day, which may help to promote a more restful night
• Avoid stimulants. No caffeine (tea, coffee or sodas) should be consumed past 2 pm. Alcohol and nicotine can also have adverse effects on sleep and should be avoided in the evening. Keep them from watching TV or playing games on the phone right before sleep. Both can be overly stimulating.
• Don’t sleep with a light or the TV on as these can affect sleep
• Put an easy to read clock near the bed that shows whether it’s day or night
• Something soft to cuddle, such as a stuffed animal, can be helpful
• If they wake up during the night, gently remind them it is still night and time to go back to sleep
• Talk to their healthcare provider if sleep difficulties persist. Depression can make it difficult to get a good night’s sleep.

Sundown Syndrome

Sundowning behaviors occur late in the afternoon and into the evening. Remember, however, that behaviors during these times may not be related to sundowning but may be normal dementia-related behaviors. If the behaviors consistently occur or get worse during these times, it may be sundowning which often occurs in the middle to later stages of dementia.

What can you do?

• Consider their environment. Is it too hot or too cold? Is the room adequately lit? Is their environment too loud or too busy? It’s important that they are comfortable so as not to exacerbate sundowning.
• Encourage them to do things that are enjoyable or relaxing in the late afternoon and evening
• Are they trying to let you know they have a need that is not being met?
• Avoiding daytime napping may help
• Consider using light therapy. Get them outside into natural daylight. Make sure rooms are adequately lit during the daytime hours.

Tudor Heights is Here for You When You Need Us Most

We’ve covered the most common dementia-related, difficult behaviors care providers face. Hopefully, after reading this article, you have a better idea of what to look for and are better able to pinpoint dementia triggers and you have a toolbox of tactics to help you to manage dementia-related behaviors and symptoms.

If and when you decide that additional help is needed, contact Tudor Heights in Baltimore, Maryland. Our memory care neighborhood and Valeo signature programs uphold our wellness philosophy to keep the mind and body engaged at every stage in life. Call us today or contact our extraordinary care team online to learn more.

Posted on: November 1, 2019

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