Early symptoms of Alzheimer’s disease and other related dementias may manifest primarily as memory problems. However, as the disease progresses, the brain is more and more affected, and other types of symptoms, such as mood (emotional) and behavioral changes, will begin to occur. These changes, which often cause problems, result primarily from changes in the brain that affect a person’s ability to constructively process events and situations, as well as a decreased ability to communicate.
Secondary causes of mood and behavior issues include the facts that the person’s lifestyle, day-to-day routine, and social life have been interrupted and changed permanently. This can cause depression and other problems. In addition, people with dementia who are aware of their loss of ability to communicate, recall information and memories, and function as they did before they were inflicted with dementia may feel a range of emotions. These include anger, frustration, anxiety, and depression. Furthermore, some people with dementia may become upset or suspicious due to misunderstanding things they have overheard. Also, the disease process itself may lower a person’s inhibitions to express emotions. For instance, persons with dementia may react differently than before having dementia, such as having angry outbursts or spells of extreme laughter.
While separate phenomenon, emotional and behavioral problems are often inter-related. For example, sleep disturbances may cause irritability, and hoarding may be related to anxiety, etc. These emotional and behavioral changes are normal in the progression of dementia, and many of the changes are common and predictable. Remember that the two are frequently related and that addressing one issue may help a multitude of other issues. For example, treating anxiety may aid sleep disturbances.
This article is designed to assist caregivers and others in understanding basic common emotional and behavioral problems that people with dementia experience, understanding some of the reasons behind emotional and behavioral problems, gaining strategies for coping with emotional and behavioral problems, learning the skill of redirection, and obtaining skills on gaining your loved one’s cooperation.
Watch a video that describes typical emotional problems in dementia (2 minutes long).
Dementia is associated with a host of emotional issues. Such 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 when they are in public. Visiting new places and being surrounded by strangers can be frightening and overwhelming for individuals with dementia. Likewise, being surrounded by a lot of 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 or when 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 your loved one further instructions, as further instructions might 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 is to tell you 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 individual’s behavior.
Depression is a common experience 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 since some of the symptoms are the same, such as apathy (lack of interest), memory loss, or trouble sleeping. There are some important differences between depression in people with dementia and depression in people without dementia. Depression with dementia is likely to involve change in mood, delusions, agitation, and anxiety, while other symptoms usually associated with depression, such as guilt, suicidal thoughts, and low self esteem are not as common.
Strategies: Caregivers who are concerned about a loved one’s depression should talk to a doctor in order to find out if medical treatment or counseling are warranted. It is important that the physician who evaluates the person with dementia 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.
Anxiety may be due to a compromised ability to process information and experiences, both new and old.
New places and faces can be unsettling for individuals with dementia, especially as the memories of familiar places and faces fade away. Some people respond to anxiety by pacing, experiencing insomnia or restlessness, while others may choose to cling to familiar objects or individuals.
Strategies: The best thing that caregivers can do for a person with dementia who is feeling anxious is to reassure her / him and remind her / him 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 her / his caregivers have to leave the house, the caregivers might try leaving notes telling her / him where they are and when they will be returning.
Sometimes people with dementia have mood swings because they are frustrated by their loss of abilities. Sometimes they are just scared, confused, or tired. Mood swings may also occur because an individual has pain, is too hot / 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, which may result in an increase in crying or angry outbursts.
Strategies: Try to accept that mood swings are caused by dementia and is not the individual purposely acting out. To best make the severity of mood swings less and the occurrences more infrequent, knowing the individual and their likes and dislikes is key. This includes knowing what calms the person down, what causes them to become upset, times of the day the individual is more likely to act out, music and activities they enjoy, 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. Also, have a doctor assess your loved one for depression or other psychiatric problems, minimize distractions and noises, and don’t rush your loved one.
As shown above, during the natural course of Alzheimer’s and other related dementias, it is not uncommon for your loved one to experience emotional distress from time to time. There is no simple way to make things better, but there are actions you can take to help your loved one deal with emotions when they arise. Remember, you may not always be able to 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 would tell them what things are and are not appropriate to do in public or in certain company. For instance, some caregivers find that their loved ones will use curse words or seek out alcohol more frequently as the disease progresses. Curse words, obscenities, and similar behaviors are some of the most taboo and sometimes most basic forms of expression that someone can use. When a person with dementia is surprised or frustrated, these 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 take off his / her pants when you have visitors. He / she may also try to seek out intimacy more often, sometimes even with complete strangers, or perhaps not at all.
In later stages of dementia, many people behave in an agitated, aggressive manner. These behaviors commonly occur during showering/bathing or in response to overstimulation in the environment, physical discomfort, changes in routine, and frustration with not being able to communicate or do something. 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 them to, or the way you are used to, it can be frustrating, upsetting, or confusing. It is important not to blame your loved one or react in a way to punish them, as this won’t help the situation and will likely make it worse. Rather, take a few moments to try to understand where this behavior is coming from and then use effective strategies to cope with the behavior (more information below). Remember, your loved one’s ability to control their behavior is compromised, while the people they interact with have more control. Also, remember that your behavior has a profound impact on your loved one. Check your body language, facial expression, tone of voice, and mannerism first to make sure they are in line with the message you hope to communicate to your loved one.
Below are some specific problem behaviors that may occur among people with dementia. The following text describes these behaviors and strategies for coping:
Persons with dementia may sometimes refuse help or they may 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 their regular caregiver is coming back in a little while and tell them that you will help out until the person returns. If worry over an upcoming event brings a lack of cooperation, it may be helpful to forgo advance warning of potentially upsetting events, such as a visit to the doctor. If the person with dementia is being uncooperative in order to gain a sense of independence or control, it may help to give him / her a task to do. For example, “How about you start combing your hair while I finish tying these shoes?”
Some people with dementia may hoard food or other items, creating their own private collection or supply. This is often a harmless behavior, which frequently makes the individual feel safe and in control. As with lost items, 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 to it, as small stockpiles are harmless. Intervene only if the behavior is destructive or excessive. Check your loved one’s usual “hiding” places and then also be sure to check through the trash or dirty laundry. Some caregivers also find it helpful to keep extra closets and cabinets locked when they are not regularly in use, so as to limit the number of new hiding places.
People with dementia may repeatedly say or do something. For example, they may repeat a word or question or pace back and forth. This type of behavior may 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 well or forgetting that they already said a certain phrase or sentence.
Suggestions: Allow your loved one to participate in repetitive activities if they seem to comfort him / her and do not cause 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, but then be 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% 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. 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 quiet 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.
“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% of individuals with Alzheimer’s disease experience sundowning. These episodes may be due to tiredness at the end of the day and / or confusion due to problems with the biological clock, which is a bodily sense of the time of day. Learn more about sundowning here.
Suggestions: To avoid confusion and agitation that occurs at the end of the day, close curtains before it gets dark outside and turn on indoor lights. Handle abnormal behaviors and sleeplessness as described above.
“Swearing” or “cursing”, otherwise known as profane language, is sometimes heard coming from people with Alzheimer’s disease and other related dementias. 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 him / her from swearing.
Watch a short video about dementia and foul language. (1 minute 40 seconds long)
According to the Alzheimer’s Association, 6 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 because they are confused. 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 id 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, not remembering the need to use the bathroom, or simply not knowing / remembering where the bathroom is or how to use it. Learn more about incontinence here.
Suggestions: Move your loved one’s bedroom closer to the bathroom, have your loved one take regular scheduled bathroom breaks, have your loved one dress in 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.
For individuals with dementia, false accusations, such as accusing someone of stealing from them or trying to hurt them, is fairly common. In many cases, hallucinations or delusions may play a role. In addition, these false accusations could be an attempt to find a logical explanation for a misplaced object or simply a result of confusion or fear.
Strategies: Try not to take any accusations personally, and gently explain to your loved one that you are not trying to harm them or take anything away. Try to understand why your loved one with dementia is making an accusation. For instance, is an item of theirs missing?
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 remove him / her from the situation. Even though these kinds of situations may be embarrassing and frustrating for caregivers, they should try not to get angry with their loved ones, since they may not understand that they are doing something wrong or inappropriate.