How to Handle Difficult Behaviors
Memory loss is the most well-known result of Alzheimer’s disease and other types of dementia, but as these diseases affect the brain, behavior can change, as well. We would like to offer tips on ways to navigate these challenges and make the journey easier.
It is important to remember that these behaviors are caused by illness, not by intentional willfulness on the part of your loved one. As brain damage grows, the patient cannot remember what was once considered normal, acceptable behavior. While dementia can present itself differently in each individual, common behaviors develop that affect the patient’s family, caregiver and quality of life:
Agitated or Violent Behavior
Agitated or violent behaviors can be caused by personality changes brought on by dementia. Mild-mannered people can become aggressive or lose inhibitions because of changes in their brains. Aggressive behavior can also be caused by physical discomfort or unexpressed emotions, such as frustration, fear or anger.
- First, it is important to keep yourself and your loved one safe. Remove all firearms and weapons from the reach of the patient. Stay away from someone whose violence puts you in danger, and get help immediately.
- It might feel natural to want to conceal your loved one’s unusual behaviors, even to the point of hiding violence from friends and family, to protect your loved one’s reputation. While the sentiment is honorable and understandable, it is more important to get help. The behavior is not a character defect. It is caused by physical and chemical changes in the diseased brain. Environmental changes and medications can help control violence in people with dementia.
- Assuming your safety or your loved one’s safety is not in danger, try to remain calm. When patients do not know what emotion is appropriate to feel or display, they will often reflect the emotions of people close by. If you escalate your emotions, your loved one may instinctively escalate, as well.
- Do not argue with someone who is agitated. Patients with dementia often do not have the ability to follow an argument, and this frustrates them further.
- Try to distract the patient. If a certain activity has caused frustration or anger, changing the activity can help. If the person does not want to change clothes, for example, stop the activity, redirect to something the person likes doing, then try to change clothes 15 or 20 minutes later.
- Do not try to negotiate or punish the patient for bad behavior. Cause and effect are beyond the cognitive ability of many with cognitive changes, so punishment will only further frustrate the patient, possibly causing more agitation or violent behavior.
- Try to keep a written account of aggressive or violent behaviors. This might seem overwhelming for a busy caregiver, but the record can help predict outbursts, so they can be prevented.
- Prevention of aggression:
- Maintain a daily routine. Keep regular sleeping/eating/activity schedules. Routines soothe patients with dementia.
- Provide exercise. This helps ensure your loved one is tired when it is time to sleep, and helps provide energy during the day. Disruptions in sleep and pent up energy can lead to aggressive behaviors. It also helps maintain a healthy body, which tends to have fewer aches and pains that can cause frustration and anger.
- People with dementia often do not know how to communicate hunger, thirst, pain or other discomforts. Try to predict those needs and keep them in check with regular meals, attention to movements that might signal pain, and asking if the loved one is comfortable, hungry, thirsty, etc.
- Help patients prepare for change by telling them about upcoming changes in short, direct sentences. For example, “Our good friend, Nancy, is coming to visit today. It will be fun to see her,” or “We are going to visit your doctor today. It will be a short visit, and then we will come home.” Keep your delivery positive, and remember that you might have to repeat this information right before the activity.
People with cognitive changes wander because they can become disoriented, even in familiar places. They may want to “go home,” even when they are home, for instance. They can wander because of confusion, such as looking for someone they remember from the past. Or they may wander away from a new or unfamiliar setting. They can simply forget how to locate a familiar and convenient place, such as the bathroom, and wander out the front door looking for it. Boredom or agitation can prompt wandering, as well.
- Have a daily routine. Routines soothe patients with dementia, preventing the anxiety that can lead to wandering. Regular activities stave off boredom, which can lead to wandering.
- Avoid busy, crowded settings such as shopping malls, loud sporting events or grocery stores that can be disorienting.
- Provide daily exercise. This helps with agitation and prevents minor aches and pains, which can lead to wandering.
- Make a point to ask about thirst, hunger or the need to use the bathroom. Loved ones can wander looking for food, for example, and become disoriented.
- Reassure loved ones about their safety and whereabouts. “You’re in your favorite chair watching baseball on TV. This is a good place to be.”
- Make your home wander-resistant:
- “Hide” door locks above or below their normal locations on doors.
- Camouflage door handles by painting them the same color as the door or covering them with material that matches the door.
- Use motion detectors. Bells attached to doorknobs can alert you to a loved one’s comings and goings. Advanced home security systems can include motion detectors in each room.
- Use night lights in the bedroom, hallways, bathrooms and any other rooms your loved one might use at night.
- Keep car keys out of site.
- Have a plan in place for when your loved one wanders.
- Ask neighbors to alert you if they see your loved one wandering.
- Let local police know in advance that your loved one has Alzheimer’s and might wander.
- Know which neighbors to call if your loved one wanders off near home. Have contact information handy.
- Provide your loved one with an I.D. bracelet displaying contact information and possibly an alert saying that the wearer has a cognitive disability like Alzheimer’s or Parkinson’s, etc.
- After a short search of the neighborhood, alert the local police that your loved one is missing, has a cognitive disability (Alzheimer’s, Parkinson’s, etc.) and is a “vulnerable adult.”
- Keep a recent photo handy.
There will likely come a time when it is no longer safe for you loved one to drive a car. People with dementia may get disoriented when driving in a familiar neighborhood; may drive somewhere unintended, like to a previous job or place of employment; may become agitated behind the wheel; or may drive too slow or too fast. All of these are signs that the patient should no longer drive.
The loss of independence associated with driving can be a source of anger, disappointment and frustration. It can also be a blow to the loved one’s ego. Communication about the decision to prohibit driving must be sensitive to the emotions, but it must be firm and unwavering. Consider asking the patient’s doctor to communicate that driving is prohibited for medical reasons.
Safety for the patient and for others is of utmost importance. Attorneys will tell you that that economic risk is at play, as well, if you knowingly let your loved one drive with debilitating dementia. If the patient injures someone, the patient’s entire savings could be at stake.
- Address the dangers of driving early rather than later. Don’t wait until there has been a tragedy before addressing the problem.
- Offer to drive your loved one places and ask friends and family to provide transportation for your loved one. This is something specific you can let friends do for you as the primary caregiver.
- Ask the patient’s physician to tell the patient that he or she is prohibited from driving due to the illness, medications and side-effects. Get this in writing from the physician.
- If your loved one will not agree to stop driving, hide the keys, disable or get rid of the car. This may feel deceptive, but it can save your loved one’s life – and the lives of others.
Changes in Hygiene
Bath time can be challenging for patients for several reasons. The disease may prevent them from understanding that they need to bathe. In addition, the bath or shower can be scary for some patients. They might be afraid that they will fall on the slippery surface. They may be afraid of getting wet or getting water in their mouth, nose or eyes. There is often a sense of lost privacy and lost control.
- Provide as much privacy and independence as possible while bathing your loved one.
- Maintain a calm demeanor to balance out the patient’s potential fears.
- Use the bath instead of the shower.
- Put a chair in the bathtub or shower.
- Provide handrails for stability.
- Never leave the patient alone in the bath or shower.
- Try asking a son or brother to bathe a male loved one; a sister, daughter or female friend for a female loved one.
- If possible, get a professional caretaker or nurse to come two or three times per week to bathe your loved one. Try sponge baths to clean the face and privates in between baths.
- Don’t worry about missing baths every so often if it upsets them.
- If the patient is agitated about going into the bath, stop and focus on a different, more pleasant activity, then try again later.
- Try to make bath time a regular part of your loved one’s routine, so that it is perceived as a common activity.
People with dementia may repeat a question or activity multiple times for a few different reasons.
- They may have anxiety that they are trying to release or resolve.
- They may simply be bored and need an activity.
- They might not remember that they already asked the question.
- Listen to what your loved one is repeating in order to discern an anxiety or emotion behind the words. Listen to the tone. Try to address the concern rather than the specific question. For instance, if fear is behind the repeated question, say, “Everything is fine and you are safe here.” If they keep asking what time it is, you might try saying, “We are not late anywhere. This is exactly where we are supposed to be right now.”
- Try to find a structured activity that will engage the loved one and provide a distraction from the repeated question or activity.
- If the patient is repeating an activity like folding a napkin over and over, put the activity to use and ask for help folding laundry, for example. This also helps your loved one feel useful and active, and it provides a distraction from the cycle of repetition.
- Some repetitive actions signal that the patient’s brain is “stuck” in that mode. This is common and not to be alarming. Sometimes, a simple touch or a redirected activity can break the cycle.
- Sometimes, the patient really is looking for an answer and doesn’t remember asking the question. Provide an answer. Write the answer down and put it somewhere the patient can easily see it.
Difficulty with Money Management
At some point during the progression of the disease, your loved one will no longer be able to handle financial details, such as paying bills, making purchases, overseeing investments, or interacting with banks and financial advisors. If your loved one has handled financial concerns for a long time, it might be difficult to discuss turning financial control to someone else. Some advance planning may help make this conversation easier when the time comes.
- If possible, discuss financial wishes with your loved one before the management of the financial burden is too much. When the patient is first diagnosed with memory issues, discuss how to handle finances.
- Identify a trusted person who can help with finances and who is willing to take over when necessary.
- Seek guidance from an attorney who is trained in elder/geriatric law. NNAC social workers can talk with you about legal resources. You can also find help at your local Alzheimer’s Association office and at www.lawhelp.org.
- Be careful about divulging information about your loved one’s disease. Most people are honest and compassionate, however some might take advantage.
- For example, it might seem helpful to tell your bank tellers or credit card customer service representatives that your husband has Alzheimer’s and can’t make withdrawals or purchases. However, if you do not know them well, they might turn that information around for personal gain. It might be safer to simply work with the bank or credit card company to set limits on the patient’s access, without offering a reason.
- Make sure you are on a Do Not Call list for phone solicitation. Be mindful of conversations your loved one has when answering the phone, in case it is someone asking for donations or selling something.
Changes in Eating Habits
Eating can become a power struggle when a patient with dementia refuses to eat or becomes a very finicky eater. Patients’ tastes may change, they may lose their appetites, or they may not understand how or why to eat. Some people with cognitive illness develop a paranoia and falsely believe that others are trying to poison them.
Unless there is an important reason for the patient to be on a specific diet, the key is to simply get your loved one to eat. For many patients with dementia, the risks associated with not eating are worse than those associated with not eating well.
- Let them eat what they want, without a strict focus on nutritional needs. If they love ice cream, let them have ice cream for dessert after every meal. If they love hamburgers, let them eat hamburgers every day.
- Provide choices. Rather than asking them to eat an orange, try asking, “Do you want an apple or an orange?”
- Serve meals at the same time and place every day. Consistency and repetition are soothing to patients with cognitive challenges.
- Try having several small meals or snacks instead of three larger meals per day.
- Show them how to begin eating. Patients with cognitive challenges sometimes forget the steps. Demonstrate by using a fork to take a bite of your meal.
- Give them one item to eat at a time. They can become confused with several different colors and textures on a single plate.
- Use simple plates with no elaborate decorative designs. This helps keep focus on the food.
- Check with a physician to make sure the lack of appetite is not due to a physical problem. For example, some people with cognitive disease find it hard to swallow. If this is the case, a physician might recommend a change in diet or routine to prevent choking.
Inappropriate Behavior in Public (or private)
Dementia can affect the portion of a person’s brain that regulates inhibitions. Therefore, as the disease progresses, formerly modest patients might disrobe, urinate or masturbate in public. There is usually no sexual or aggressive intent, it is simply a lack of control coming from the part of the brain that says that behavior is inappropriate.
- Keep your shocked reaction in check. Calmly guide your loved one to a bathroom or more secluded location and cover appropriate parts.
- Do not reprimand or show anger. This may only confuse or anger your loved one, who does not understand appropriate behavior.
- Distract your loved one with another activity.