When the sun sets, his confusion and anxiety worsen. Sleep is difficult, until it’s morning and another day of activities begin. I don’t know if he’ll be better or worse because I can’t control how he feels—the disease is doing that.
So what can we do?
The symptoms of Alzheimer’s disease and other related dementias are typically memory-related, but mood and behavior swings also occur as the brain becomes increasingly worse at processing information.
It can be devastating for a person’s lifestyle, day-to-day routine, and social life to be interrupted and altered permanently by cognitive decline. Depression results. Loss of communication ability, access to memories and general functionality result in a range of emotions including anger, frustration and anxiety. Dementia also causes suspicion because situations become difficult to understand. And the disease lowers a person’s inhibitions in expressing emotions, resulting in outbursts or even spells of extreme laughter.
Behavior and emotions are distinct, but often interrelated. Sleep disturbances may cause irritability, and hoarding is a result of anxiety. These emotional and behavioral changes are normal in the progression of dementia, and can even be considered common and predictable. Remember that the two are related, and that addressing one issue may help a multitude of others; treating anxiety, for instance, may aid problems sleeping.
In this article, we hope to assist caregivers and others in understanding the basic, common emotional and behavioral problems experienced by people with dementia. Understanding the reasons behind emotional and behavioral problems is an important step toward helping your loved one and earning his/her cooperation.
Dementia is associated with a host of emotional issues. Problems stem from the direct effects of the disease on the brain, but also indirect sources, such as changes in living situations, routine, and social relationships. Common emotional problems experienced by people with dementia and their caregivers include (but are not limited to) the following:
Anger often arises as a response to feeling frightened, frustrated, embarrassed, or humiliated. What might seem like random aggression could be the result of something in the environment. For instance, some caregivers report that their loved ones tend to act out in public. Visiting new places full of strangers can be frightening and overwhelming for individuals with dementia. Likewise, being surrounded by activity and noise can be distracting or upsetting. Some people with dementia may also get angry or frustrated when a caregiver tries to assist them because they can’t successfully perform a task on their own.
Strategies: Caregivers should try breaking down complex tasks into smaller manageable steps to avoid overwhelming or frustrating loved ones with dementia. Focus on achieving each step before giving further instructions which may be hard to remember. Many caregivers find it helpful to give their loved ones a task that allows them to have a say in what is happening, even if it’s merely deciding whether or not something is okay. Finally, if all else fails, give your loved one a chance to calm down in his/her own time.
Remember not to take it personally. The disease causes the behavior.
Depression is common for individuals with dementia. The feeling of social isolation and loss of control that comes with the progression of dementia may contribute to depression and loneliness. It can sometimes be difficult for caregivers to distinguish depression from dementia because some of the symptoms are the same, like apathy (lack of interest), memory loss, or trouble sleeping. Watch for signifiers of dementia-born depression. Depression with dementia is likely to involve change in mood, delusions, agitation, and anxiety; other symptoms usually associated with depression, such as guilt, suicidal thoughts, and low self esteem are not as common.
Strategies: Caregivers concerned about a loved one’s depression should talk to a doctor to determine if medical treatment or counseling is warranted. It is important that an evaluating physician be familiar with what depression looks like when paired with dementia. Caregiver input is also important in diagnosing this form of depression. Caregivers may also try to make more of an effort to keep their loved ones active and socially involved. Develop a list of your loved one’s favorite activities (with consideration for what’s physically possible). This list may change as the disease advances, so be flexible, updating as needed.
Anxiety may be due to difficulty processing information and experiences, both new and old. New places and faces can be unsettling for individuals with dementia, especially as their memories of familiar places and faces fade away. Some people respond to anxiety by pacing, experiencing insomnia, or restlessness; others may choose to cling to familiar objects or individuals.
Strategies: The best thing caregivers can do for a person with dementia who feels anxious is to reassure and remind how much they care. Additionally, many caregivers find it helpful to come up with peaceful and distracting activities that their loved ones can focus on instead of worrying. For instance, if a person with dementia becomes anxious whenever a caregiver has to leave the house, the caregiver might try leaving notes telling where they are and when they will return.
Sometimes people with dementia have mood swings because they are frustrated by a loss of abilities. Sometimes they are just scared, confused, or tired. Mood swings may also occur because an individual has pain, is too hot or cold, is hungry, or is bored. Other possible explanations include untreated psychiatric disorders, diet, caffeine, feeling rushed, clutter, noise and general “overstimulation.” Dementia may lower a person’s inhibitions or “filter” (due to brain changes) when it comes to expressing emotions, resulting in an increase in crying or angry outbursts.
Strategies: Try to accept that mood swings are caused by dementia and are not the individual purposely acting out. To lessen the severity of mood swings and make occurrences less frequent, knowing the individual’s likes and dislikes is key. Know what calms the person down, what upsets him/her, times of the day the individual is more likely to act out, favorite music and activities, etc. This allows you to predict when mood problems might occur, do your best to avoid them, and if they do occur, know what might soothe the individual. Have a doctor assess your loved one for depression or other psychiatric problems, minimize distractions and noises, and be very patient. (No rushing).
As shown above, during the natural course of Alzheimer’s and other related dementias, it is common for your loved one to occasionally experience emotional distress. No simple way exists to improve things, but there are actions you can take to help your loved one handle emotions when they arise. Remember, you cannot control your loved one’s emotions, but you can control your own reactions to them.
Persons with dementia may gradually lose their so-called “internal critics” that tell them what is appropriate. Some caregivers find their loved ones will use curse words or seek out alcohol more frequently as the disease progresses. Obscenities are typically taboo, but can sometimes be our most basic forms of expression. When a person with dementia is surprised or frustrated, curse words might spring to mind.
Similarly, people with some forms of dementia may no longer recognize what is considered socially or sexually appropriate. For instance, a person with dementia may try to shoplift, or undress when you have visitors. He/she may also try seeking intimacy more often, sometimes even with complete strangers.
In later stages of dementia, many people behave in an agitated, aggressive manner. These behaviors commonly occur during showering/bathing, in response to overstimulation in the environment, physical discomfort, changes in routine, and frustration with not being able to communicate or accomplish a task. When this agitation happens repeatedly, medications (anxiolytics and antipsychotics) may be helpful. Learn more about Medications to Treat the Symptoms of Dementia.
When your loved one doesn’t act the way you want or are used to, it can be frustrating, upsetting, and confusing. Do not to blame or punish your loved one, as this will likely make the situation worse. Rather, take a few moments to understand where this behavior is coming from, then use effective strategies to cope (more information below). Remember your loved one’s self-control is compromised.
Also remember that your behavior has profound impact. Check your body language, facial expression, tone of voice, and mannerisms. Make sure they are in line with the message you hope to communicate.
Problematic behaviors may occur among people with dementia. These are normal, and simple strategies can help cope:
Persons with dementia may refuse help or only accept help from a specific individual. Possible causes include mistrust and confusion.
Suggestions: Sometimes it is simply a matter of how the individual is approached. For instance, you might say that the regular caregiver is coming back soon and you are helping out until the person returns. If worry over an upcoming event brings a lack of cooperation, it may help to forgo advance warning of potentially upsetting events like a visit to the doctor. If the person with dementia is being uncooperative in order to gain a sense of independence or control, come up with a task. For example: “How about you start combing your hair while I finish tying these shoes?”
Some people with dementia hoard food or other items, creating their own private collection or supply. This is usually harmless, and makes the individual feel safe and in control. Individuals with dementia may hide things in places where they kept things earlier in life, such as underneath mattresses, in dresser drawers, or inside jars.
Suggestions: Rather than confronting and correcting your loved one, try adapting. Intervene only if the behavior is destructive or excessive. Check your loved one’s usual “hiding” places, and check the trash or dirty laundry. Some caregivers find it helpful to keep closets and cabinets locked when they are not regularly in use, to limit the number of new hiding places.
People with dementia may repetitively say or do something. They may repeat a word or question, or pace back and forth. This behavior could be due to anxiety or feeling frightened, and the repetition creates a sense of familiarity and security. It could also be a result of only remembering certain things or forgetting what was previously said.
Suggestions: Allow your loved one to participate in repetitive activities that seem to give comfort without causing harm. If they do cause harm, try redirecting your loved one’s attention to a harmless or useful activity.
Some people with dementia may have trouble sleeping, or they may sleep for long hours during the day and stay up all night. According to the Alzheimer’s Association, individuals who are in late-stage Alzheimer’s are awake in their bed, on average, 40 percent of the night and then spend a large portion of the day asleep. This sleeplessness issue may be due to changes in the brain caused by dementia, as well as changes in behavior and routine.
Suggestions: Use natural or artificial lighting to help cue your loved one when it is daytime and when it is nighttime (and therefore, time to sleep). It can be helpful to use curtains to block light and use a sound or white noise machine to block outdoor noise. You may also want to prevent your loved one from taking too many naps during the day, and have your loved one go to bed and get out of bed at the same times each day. Avoid giving your loved one caffeine, especially after lunchtime. Consider CBD which has been known to help with sleeplessness. More on CBD Oil. Simple exercise or activity during the day also can contribute to better sleeping at night. Plan for a calmer, quieter, but structured time in the late afternoon and evening, such as a peaceful walk. You may need to consult a physician for medication, although there may be unwanted side effects. Keep your loved one’s safety in mind, in case he or she is awake while you sleep. More on sleep challenges.
“Sundowning” refers to an increase in confusion, agitation, disorientation, and anxiety that begins around dusk and continues into the night. According to the Alzheimer’s Association, some studies show that up to 20 percent of individuals with Alzheimer’s disease experience sundowning. These episodes may be due to tiredness at the end of the day and confusion due to problems with the biological clock, which is a bodily sense of the time of day. Learn more about sundowning here.
Suggestions: Close curtains before it gets dark outside, and turn on indoor lights. Handle abnormal behaviors and sleeplessness as described above.
Sometimes people with AD or other related dementias will swear or “curse,” using proface language. This holds true even if the individual never or rarely cursed before the disease, or only did so “behind closed doors.” It can be troubling and embarrassing when you hear your loved one start to curse more often, but there are some simple explanations, which mainly stem from a lack of impulse control.
Suggestions: Remain calm and remind yourself that your loved one is not purposefully behaving this way. Redirecting the individual’s attention, such as changing the conversation or turning on a liked television show, may distract from swearing.
According to the Alzheimer’s Association, six out of every 10 people with dementia wander. People with dementia may wander due to boredom, to relieve anxiety, because they have thirst or hunger, or simply out of confusion. They may also feel a need to “look” for someone or something, or think they need to be somewhere. Learn more about wandering here.
Suggestions: Keep an eye on your loved one and do not leave him/her unattended. Lock doors, and invest in identification bracelets and/or tracking devices. If wandering is an issue, figure out the time of day your loved one is most prone to wandering and fill that time with an activity.
Incontinence often becomes problematic in the later stages of a person’s dementia. This might be the result of a decrease in bladder and bowel control, wearing clothing that is difficult to take off, drinking too much coffee or tea, forgetting to use the bathroom, or simply not remembering where the bathroom is or how to use it. Learn more about incontinence here.
Suggestions: Move the bedroom closer to the bathroom, schedule regular bathroom breaks, have your loved one wear clothes that are easily removable, speak to your doctor about medication, and use diapers and other aids.
A person with dementia may react verbally or physically aggressive. Examples include threatening another person, screaming, pinching, pulling hair, and biting. When inflicted with dementia, an individual may not know how to communicate what it is he / she needs and behaving aggressively might be his / her way to communicate what is needed in order to get it. The individual may be in pain, be upset, confused, anxious, or the aggressive behavior may be general defensive mechanisms.
Suggestions: If you are upset by the behavior, avoid shouting and give yourself time to calm down before responding. Provide reassurance and acknowledge they way your loved one is feeling. Give your loved one a say in the situation. If you are in public, take your loved one to a quieter area. If the aggression was triggered by a task, break down tasks into smaller ones.
A person with dementia may show verbal or physical aggression. Examples include threatening another person, screaming, pinching, pulling hair, and biting. When afflicted with dementia, an individual may not know how to communicate needs, and therefore defaults to aggression out of frustration. The individual may be in pain, be upset, confused, anxious, or the aggressive behavior may be general defensive mechanisms.
Suggestions: If you are upset by the behavior, avoid shouting and give yourself time to calm down before responding. Provide reassurance and acknowledge feelings. Give your loved one a say in the situation. If you are in public, move to a quieter area. If the aggression was triggered by a task, break it down into smaller specific actions.
These simple tips often work for a multitude of behavioral problems:
If inappropriate behavior presents problems or is disturbing, caregivers should be respectful but firm with loved ones. If they are unable to calm or refocus on another activity or task, it may be best to exit the situation. Even though these kinds of situations may be embarrassing and frustrating for caregivers, they should not get angry with their loved ones, who may not understand what is wrong or inappropriate.