The Dartmouth Memory Handbook
Section 5: Mood and Behavioral Symptoms in Dementia
MOOD AND BEHAVIORAL SYMPTOMS
IN DEMENTIA – AN OVERVIEW
Robert B. Santulli, M.D.
(revised September, 2016)
Frequency of Mood and Behavioral Disturbances
In Alzheimer’s disease, it is estimated that more than 90% of patients will have one or more significant mood or behavioral symptoms at some point during the course of their illness. In other forms of dementia, the frequency of mood or behavioral symptoms may be similar, or even higher. Like everything else about dementia, of course, this is highly variable; there are some individuals who rarely exhibit mood or behavioral symptoms, while for others, these are the most prominent features of their illness throughout its course.
Impact of Mood and Behavioral Symptoms
Mood and behavioral symptoms certainly increase the suffering of both the person with the illness and care partner, and often the entire family. They decrease functional abilities, and occasionally lead to behaviors that are dangerous for the individual, the care partner, or both. Numerous studies have shown that poor control of behavioral symptoms is a major cause of hastened nursing home placement. It is these symptoms, more than almost anything, that drain the emotional resources of care partners, however loving and devoted they may be.
Reasons for Mood and Behavioral Symptoms
Why do these symptoms occur with such frequency? It must be remembered, first and foremost, that behavioral symptoms in Alzheimer’s disease or other dementias are no one’s fault. These behaviors develop because of the brain damage which is caused by the disease process itself; in that sense they are no different than the memory loss, language disturbance, loss of ability to perform daily tasks or other symptoms which are at the heart of the illness. In addition, however, certain behavioral syndromes can develop as a psychological reaction to the disease (frustration, sadness or anger for example) particularly in the earlier stages.
Some of the basic characteristics of dementia that can lead to mood and behavioral symptoms are:
• Loss of inhibition and impulse control. This is a characteristic that is, to a great extent, due to damage in the frontal parts of the brain and its connections, and is extremely common in most forms of dementia. It is characterized by acting on impulse; saying and doing things without being concerned about the impact on others; expressing, through words and behaviors, one’s emotional reactions to situations rather than being able to control them in more socially appropriate ways; or not being aware of or concerned about “right and wrong”.
• Loss of mood regulation. This is due to damage in vital areas of the brain, and can lead to depression, manic-like behaviors, frequent changes in emotions (emotional lability) or the tendency, to use a common phrase, to “wear your emotions on your sleeve”.
• Decreased comprehension of the immediate environment, which can lead to misperceptions, misunderstanding, fear or other strong reactions. For example, patients may misperceive the intent of a home health aide, and feel that the individual who is trying to assist them with bathing is actually trying to assault them physically or sexually.
• Frustration. It must be intensely frustrating to experience the memory and functional impairments that occur daily, for someone with dementia. Extreme frustration, particularly in a person who has also lost impulse control, can lead to a variety of difficult behaviors.
• Poor judgment. Because of the damage to frontal lobe systems, persons with dementia frequently loose the ability to make sound judgments about even trivial matters, as well as more significant ones. The effect of this, like the effect of loss of inhibition and impulse control, can be to turn a formerly calm, pleasant, and thoughtful person into someone who can be very challenging interpersonally.
• “Catastrophic Reactions”. Mace and Rabins, in The 36 Hour Day, use this term (borrowed from earlier literature on traumatic brain injury) to describe an emotional overreaction in someone with Alzheimer’s disease when he or she is confronted with a stimulus that is too complex, noxious, new, or confusing, or a task which is too difficult for the individual to master. When faced with this situation, the person with dementia may become excessively angry, upset, anxious, frightened, irritable or aggressive, as a seemingly involuntary response to the unpleasant stimulus. As persons become more demented, they are more prone to these emotional overreactions, stimulated by what may at the time seem like trivial events. The concept of a catastrophic reaction is a very useful one in trying to understand the often – puzzling behaviors of persons with Alzheimer’s disease and other dementias. It can also help the care partner think of ways to avoid similar reactions in the future, by analyzing and understanding the apparent precipitant, and avoiding it in the future, if at all possible.
What is the Effect of the Underlying Personality?
The type of character or personality someone had before they developed dementia may play a role in determining the mood and behavioral symptoms he or she develops once Alzheimer’s disease or other dementia develops. For example, someone who has always been high-strung and a worrier may be likely to suffer significant anxiety with the disease. A person who had always been somewhat suspicious of others may well become paranoid once dementia develops. People who are “control freaks” – so-called “Type A’s” who need to be in charge – often have a very difficult time with the disease, because dementia and the impairments it produces take away the ability to be in control of oneself and one’s environment in fundamental ways. However, the disease does not necessarily lessen the desire or need to be in control for these individuals. On the other hand, persons who are easy-going, and glad to have others making decisions for them often seem to have an easier time dealing with dementia.
There are certainly exceptions to this: there are times when someone who was very difficult before dementia may become much easier to get along with once they are ill; conversely, people sometimes develop difficult characteristics that are quite different than their earlier character style. At the present time, there is no way of predicting, or controlling, the kinds of personality traits that may develop as part of a dementing illness.
Persons who have unresolved conflicts in their marriage (or parent – child relationship in the case of an adult child who is the primary care partner) may have more difficulty in the care situation than those who began the illness journey with a healthier relationship.
Inevitably, some of the unresolved issues that may have been avoided for years, or decades, will come to the surface.
However, behavioral and interpersonal issues can develop even in the context of the strongest relationships; the quality of the relationship will make the situation better, or worse, but will not totally eliminate some of the behavioral challenges and interpersonal stresses that can develop when someone has dementia. At the same time, the onset of dementia and a new role for the primary care partner can lead to fundamental growth and improvement in a marital or parent-child relationship that was previously mired in dysfunction.
“He’s Doing It On Purpose!”
At times, certain behaviors of the person with Alzheimer’s disease or other dementia seem purposeful, or intentional, as if they are being done simply to annoy the care partner. Putting things in odd places, or not being able to get dressed independently are examples. The behavior may appear volitional because there is such variability from day to day, or even from hour to hour. Simply because someone was able to do something on their own yesterday doesn’t mean that they can do the same thing today.
In addition, individuals with Alzheimer’s disease and other dementias frequently become unable to appreciate other people’s feelings or needs as sensitively as they once did.
As a result, they can seem “selfish” or “self-centered”, and uncaring about other peoples’ needs or feelings. In reality, they may be no longer able to recognize the needs or feelings of others, because of the disease. In general, when trying to determine if someone with dementia can’t do a particular task, or simply won’t do the task (implying some degree of volition) one should always assume that he or she cannot do the task at this time, even if he or she could do it yesterday, or last week, or even earlier the same day. Even if that assumption is not always correct, it is a stance that leads to less friction and less anger on the part of the care partner. After all, the goal is not necessarily to uncover the ultimate truth about a complex behavior or interaction, but to simply get through the day with as little stress as possible.
The Importance of Routine
Novel situations make persons with dementia uncomfortable, and even something new that seems to others like a nice change of pace can trigger a catastrophic reaction.
Sameness and predictability day in and day out is very comforting for people with memory disorders, even if that sameness would have been excruciating for them prior to their illness. This is especially important to remember around the holidays, when new situations with lots of stimulation that were once exciting and enjoyable may now lead to a very unpleasant time for all concerned.
(see also p. 163)
If there is a change in behavior, or the individual appears particularly distressed and can’t express what the problem is, it may be important to rule out any acute medical problems such as a urinary tract or respiratory infection, or pain. Undiagnosed and untreated pain is common in persons with dementia who are no longer able to communicate their needs verbally.
Non–Medication Interventions for Behavioral Problems It is always best to try non-pharmacologic approaches to improving behavioral problems before resorting to drugs, although it is sometimes the case that medications may be needed, along with other techniques, to deal with a behavioral symptom. It is not a failure on the part of the person with dementia or the care partner if psychiatric medications become necessary; it merely reflects how difficult and distressing these problems can be; it should be viewed as a sign of wisdom and good judgment to be willing to use all available tools to try to help improve a difficult situation.
Try to Understand the Behavior
Examine the behavior that has occurred; consider why this symptom, at this time, in this particular circumstance, occurred. Always assume there is a reason why a difficult behavior occurred exactly when and how it did. Trying to make sense out of something that may seem senseless is not always successful, but it can often lead to a better understanding of the needs of the person with dementia, and may help avoid the problem the next time. It can also help the caregiver feel less passive and victimized by the behaviors if he or she adopts an attitude of curiosity about the cause and meaning of a particular behavior.
Responding to Behavioral Symptoms
In reviewing a catastrophic reaction, or other difficult behavioral event, consider what there is in the environment, the routine, or in the caregiver’s behavior that needs to change, to lessen the likelihood of a similar event in the future. This is not to say that the environment, or the routine, or the caregiver is to blame for what has happened; but it is certainly the case that the person with dementia cannot be expected to learn new ways of reacting, so those around him or her need to make the change, instead.
Persons with dementia are largely incapable of new learning, or modifying their behavior simply because they have been asked to do so, no matter how agreeable they had been previously.
One of the most useful tools in dealing with difficult situations is to simply distract the person. Change the topic from, for example, “When will I drive again?” or “Where is my mother?” to something less emotionally charged, such as what is for dinner tonight, or “I saw the funniest thing at the store today”. One small consolation of short-term memory loss is that successful distraction may cause the person to forget whatever it was that he or she was concerned about moments earlier, because of the introduction of a new topic. There are times where the issue is of such importance to the person that they are not able to be distracted, but this technique works surprisingly frequently. Being good at distraction takes creativity and an ability to “think on your feet” on the part of the care partner. It may not come naturally at first but is a technique that can be learned, with practice.
Often, it is best to distract someone with an activity, rather than just conversation, particularly as the disease progresses and meaningful conversation becomes more difficult. Good examples of activities which are frequently helpful in calming a person with dementia are listening to music; going for a walk; taking a ride in the car; watching animal, travel, nature, or cooking shows on television; having a massage; preparing and eating some “comfort food” together, etc. These are primarily non-verbal activities that remain effective and pleasurable long after verbal communication becomes a significant challenge. Listening to music can be particularly valuable, if someone has previously enjoyed music, and if the individual’s favorite type of music is played.
Specific Mood and Behavioral Symptoms
ADAPTED FROM SANTULLI RB:
THE ALZHEIMER’S FAMILY: HELPING CAREGIVERS COPE
New York: WW Norton, 2011
Some verbal aggressiveness (even from someone formerly very mild mannered) should be seen as an almost inevitable part of the illness, and the caregiver’s primary task is to not take it personally and to not react in kind. More serious verbal aggression and physical aggression are less frequent in persons with Alzheimer’s disease, but do occur, and need to be taken very seriously.
Aggressive outbursts can be viewed as the result of a number of different factors in someone with dementia:
• Loss of judgment and the sense of social appropriateness;
• Loss of impulse control;
• Frustration over one’s own limitations being “taken out” on someone else (usually the primary caregiver);
• Frustration over the limitations of autonomy placed on the individual as a result of his or her illness;
• Depression and/or irritability;
• Misperceiving someone who is trying to help as someone who is attempting to do harm;
• Catastrophic reactions;
• Misdirected responses to physical pain or distress;
• And many others.
Abusiveness, or severe verbal aggressiveness, or any degree of physical aggression towards a person or toward property calls for immediate action.
It is critically important for caregivers to protect their own safety, first and foremost.
Depending on the situation, reacting to an aggressive episode may require an urgent consultation with the physician, or a call to 911. Most emergency responders are aware and sensitive to the fact that aggressive outbursts can occur in persons with dementia, and most will try to help settle the situation, insure the safety of the victim, and possibly arrange to have the person evaluated by the local emergency room. Usually, they do not handle these situations in a punitive manner.
For the caregiver, it is certainly appropriate to very clearly indicate to the individual that such behavior is completely unacceptable, but doing so may not have a lasting effect, due to the memory disorder. Repeated episodes of aggressiveness are one of the most frequent precipitants for placement in a long-term care facility. Certainly, repeated episodes of physical aggression should be a clear call for a significant change in the caregiving situation.
Medications for Aggressiveness
It is sometimes possible to lessen aggressiveness with appropriate medications. The use of medications for aggression should depend on a thorough evaluation by a clinician experienced in this area.
“Agnosia” refers to the inability to recognize some one or some thing that should be familiar. At times, it can be confused with a delusion (see below), because the person with the agnosia may insist on something that isn’t true. Common examples of agnosias are:
“You aren’t my wife/husband”. This is a common belief that develops in persons with dementia. Understandably, it is very upsetting to both the patient and the spouse. While it may have delusional components, it actually reflects an “agnosia”. An agnosia is a general term for a loss of ability to recognize objects or people who should be familiar. It is not that the spouse is “forgotten”; the person with Alzheimer’s can no longer connect the visual, auditory or other signals from the spouse with those parts of the brain that “remember” the spouse, so the person seen looks like a stranger. Persons who have this agnosia will often say, “Have you seen my husband?” or something similar, making it clear that the spouse is still remembered and missed.
“This place is not my house”. This is another relatively common agnosia. It reflects the inability of the person to make a connection between the visual and other stimuli created by being in the house with the actual memory of the home. In addition, patients may have a memory of a home they had lived in many years ago, and don’t remember the current house, particularly if it is a place they have inhabited only a relatively short time. Less commonly, patients will lose the ability to recognize their own images in a mirror, and will be frightened, angered or upset by the presence of an “intruder” in their homes. At times, this agnosia can be so upsetting that it becomes necessary to remove or cover the mirrors.
Dealing with Agnosias
Usually, it does no good to confront the individual with reality, by showing him or her the deed to the house, or by showing a marriage certificate, etc. However, it is understandable that a spouse might want to make this point very emphatically, whether or not it helps. Using distraction, changing the subject or making comments such as, “I’m sure he’ll be back soon”, may help, although often the patient will be persistent. It may help for the care partner to leave the room and come back a few minutes later; surprisingly, upon the care partner’s return, the patient may have no problem recognizing him or her, and usually won’t recall the “other” person who had been present moments earlier. Another technique that sometimes helps is to wear a favorite old piece of clothing that holds some special meaning in the relationship (perhaps a distinctive shirt given to the spouse by the patient many years ago) or cologne (if the patient retains his or her ability to smell) that was worn throughout the marriage. This is generally not a symptom that is either fully present or absent, at least initially; during what can be a long phase of losing the ability to recognize the spouse, the individual may go from moment to moment recognizing and not recognizing him or her. This is understandably confusing, exasperating and upsetting for both persons. The care partner’s main task in dealing with this is to not be upset by the agnosia. The best outcome of this situation may even be that the patient can come to realize that this person who is always around is a very good new friend, even while having no idea of his or her actual identity.
Agnosias generally do not respond to antipsychotic medications, although they can be distressing enough to the person with dementia that some pharmacologic intervention may be in order.
If the person with dementia had previously been an anxious or dependent person, then it is likely that he or she will continue to suffer from this, perhaps even more so. Most often, anxiety in the person with dementia has to do with being fearful of not being able to care for oneself, although commonly the individual is not consciously aware of that, or able to express those feelings directly. Instead, their behaviors may involve shadowing, which entails following the care partner everywhere he or she goes, so the care partner is never out of sight. This can be quite challenging for the care partner, particularly when the need for closeness continues into the bathroom and other inappropriate settings.
Some anxiety is common as a part of dementia, as the individual has awareness of his or her cognitive losses. Later in the illness, as this awareness fades, anxiety can in fact lessen, or at least be less manifest.
For persons who were never anxious or dependent prior to dementia, significant anxiety could actually signal an underlying depression. One might explore for this, but a clinician should be consulted if this seems to be the case.
Other patients who develop significant anxiety may actually need more day-to-day structure, or support; their anxiety is a signal that they can no longer manage the degree of independence that they have had (even though they may still express a desire for independence quite strongly). In general, persons with dementia are unable to “learn” to be more independent; as always, improving the situation means changing the environment, and not trying to change the person with dementia.
For most persons with dementia, and certainly those who have a great deal of anxiety, telling the individual about plans or events which are coming up in the future may just cause an increase in fretting and innumerable repetitive questions about the event. In these circumstances, it may be best to not announce upcoming plans until there is a “need to know” (i.e., right before the event). This may not seem to be kind, or fair, since that is not how these issues would have been handled in the past, but it is important to remember that the kindest, fairest way to treat someone with dementia is to do what will cause them the least amount of distress.
If anxiety is intense, or unremitting, anti-anxiety medication may be warranted. A number of medications that are calming can also worsen confusion, are habit-forming, and can cause a variety of adverse reactions; others are much safer. It is important to consult with the clinician about this and to proceed with caution.
Apathy is defined as diminished motivation. Persons who have apathy have a decreased or absent ability or desire to initiate any activity. It is likely caused by damage in the frontal systems of the brain. Apathy is one of the most common symptoms of early Alzheimer’s disease, often presenting before significant memory loss or other symptoms occur. It continues throughout all stages of the disease. It is also frequent in other forms of dementia, as well. Persons who have apathy are generally unable to entertain or occupy themselves without considerable external stimulation and suggestion. As a result, they spend a great deal of time sitting, doing little or nothing, or napping. Typically, the person with apathy is content with this, but the care partner frequently finds the behavior quite disturbing, particularly when it occurs in someone who had previously been quite active.
The prominence of apathy in persons with dementia emphasizes the need for care partners, and others, to take a very definite role in planning activities for the person with dementia. This is not to say that persons with dementia need to be kept busy all the time; indeed, they need a balance of activity and quiet time, and generally more quiet time and less activity, compared to their earlier life. But they do need to have their time structured by others, otherwise very little will happen, and while the apathetic individual may not seem bothered by this, the loss of pleasurable and cognitively stimulating activities may cause the illness to appear to progress more rapidly, and there will be less general satisfaction, overall.
It may also appear to the care partner that the person with apathy is actually overly sedated from his or her medications. While this can, of course, be the case, it may simply be that the individual naps frequently because of apathy. One can often tell if this is the case if, during a day that is particularly active, the person with dementia is able to remain alert all day, or if they seem excessively sleepy even during the activities.
Persons with apathy “rise to the occasion” and usually don’t seem sleepy when they are stimulated.
Differentiating Apathy from Depression
Apathy is not the same as “laziness”, and it is different from depression, although it can easily be mistaken for depression. Persons who are apathetic but not depressed will be able to enjoy an activity if it is presented to them, but left to their own devices they might not be likely to pursue it. For example, an apathetic individual might seem very content sitting on the couch all day, and if asked if they want to go out for lunch, might say no.
But if he or she is taken out anyway, he or she has the capacity to fully enjoy the experience, and will often express pleasure in having participated. However, the person with apathy will not learn from that experience that it is better to do things than to sit passively.
Someone who is depressed but not apathetic doesn’t appear to want to pursue activities, either. The depressed individual, when taken to lunch or another activity doesn’t really enjoy the activity, but may simply “go through the motions”. Usually the lack of pleasure is readily apparent. While this explanation may make it seem as if it is simple to differentiate these two states, in practice it can be quite difficult to tell the difference between apathy and depression. It can be helpful to have a clinical assessment to determine why an individual may be very inactive.
The most important consideration in dealing with apathy is for the care partner to understand it and not be disturbed by it. Equally important is to control one’s anger or frustration over this change in behavior; the person with dementia has little if any control over it. Once again, it is the care partner who must adapt to this new reality.
Structuring activities for the person with dementia is critical, since the individual is unable to do this independently. A variety of medications are sometimes used to attempt to treat apathy, with limited success.
Delusions are fixed false beliefs. By definition, someone cannot be “talked out” of a delusion, or have it broken down by logical arguments. Delusions occur in a great many individuals with Alzheimer’s disease and other dementias. They also occur in other purely psychiatric conditions, such as schizophrenia or bipolar illness; but their presence in someone with dementia does not imply that he or she has schizophrenia, bipolar illness, or other major psychiatric disorder. Delusions occur in people with dementia who have absolutely no prior history of psychiatric illness.
In someone with dementia, it may be unclear if a false belief is due to a psychotic process as part of the dementia, or if it is an agnosia. However, it is important to make the distinction, because pharmacologic approaches might be quite different, although there are times when making a clear differentiation can be difficult. Delusions require urgent attention if they lead to dangerous behaviors or cause significant distress (for example, feeling that one’s young child is lost when, in fact, all the children are grown and long out of the house). If, however, beliefs are benign and not upsetting to the person, it may well be that no intervention is needed, and there is no real reason to try to correct the mistaken belief.
Some common delusions in dementia:
“My parents are still alive”. If someone isn’t distressed thinking their parents are alive, but don’t visit, there is no point in trying to reorient them to current reality. It can be repeatedly upsetting every time someone is told that his or her parents are deceased (even when this happened decades earlier). It is likely that such a belief reflects the need and desire to experience the comfort of one’s parents, because his or her cognitive impairment leaves the person feeling vulnerable, unprotected, perhaps lonely and somewhat like a child.
Care partners should not try to convince their loved one about the reality of their parent’s death. Going over how old their parents would be if they were still alive, or showing them death certificates is only upsetting, or confusing, and at best will be effective for the moment only; later in the same day, or the next day, the delusion may return. It is best to deal with it by using distraction, or reassurance that even if the parents aren’t present “right now”, the care partner is here to provide whatever help or comfort they need. It is only a good idea to gently remind the person that their parents are no longer living if they are very distressed with worry about them, wondering if anything bad has happened to them, or feeling abandoned because the parents no longer visit.
This common belief is generally not responsive to medication.
“I do all the housework at home”. This belief may be a mistaken memory (or a memory from years ago, not from the present). It may also represent the desire of the person to appear more functional than they are. It is often associated with a significant amount of denial. There is no reason to challenge this belief, even though the spouse may understandably feel annoyed that he or she does all the work at home, but the person with dementia is taking all the credit. Confronting the individual with reality just leads to defensiveness and arguments most of the time, anyway.
“My husband/wife has another woman/man”. This is a surprisingly common belief in both men and women with dementia. It may reflect the patient’s fear that they are no longer desirable, or lovable, and that the spouse would be better off with someone else who isn’t such a burden. This belief can also reflect unresolved dynamics in a marital relationship, or may even grow from actual events in the past. It is important to state the reality, although this is likely to be repeatedly necessary. Particularly when there is a great deal of anger or distress over this belief, some type of intervention may be necessary, possibly including pharmacologic approaches.
“Someone is stealing my things”. This symptom usually reflects a significant degree of denial, and is the individual’s somewhat paranoid response to the fact that he or she misplaces personal belongings around the house or cannot remember where they are, or find them. People who develop this delusional belief have a need to blame others rather than seeing the problem as related to their own forgetfulness. Dealing with the symptom depends on how distressing or pervasive the belief is. Intervention may be necessary if the delusional beliefs are quite strong, and very upsetting, or if they reflect an overall paranoid trend. As always, it does no good to insist that the items were not stolen. Instead, it is usually more helpful to assist the person in trying to find what is missing. Often, it involves items that are valued by the person and which have been hidden away in a quickly forgotten location. Sometimes, they are trivial items, such as a toothbrush. Remember to look in unexpected locations (e.g., the toothbrush may be in the freezer or the pocket of a raincoat hanging in the hall closet).
“Someone is trying to harm me”. This delusion is usually very distressing for the individual, and can lead to very difficult situations with the care partner and family. Often, unfortunately, it is the primary care partner or another close family member whom the patient believes wants to cause harm. It may or may not reflect underlying tensions in the relationship; the belief can develop in what has been a very strong partnership. If the symptoms are severe and causing a great deal of distress, medication may need to be considered.
Dealing with Delusions
Dealing with a fixed, false belief can be challenging even for the most loving care partner. Usually, it does no good to confront the individual with reality, as this will commonly lead to greater tension, confusion, or an argument. One should not agree with a delusion, either; it is best to simply change the subject, or say something like, “we don’t see that in the same way”. Delusional individuals will often insist on knowing if the care partner “agrees” with them, however, and in that situation, it is best to simply indicate, for example: “I know you believe that; it must be very upsetting to you to feel someone is coming in here and stealing your money in the middle of the night”.
When delusions are very distressing, or dominate the person’s thought processes much of the time, it may be reasonable to consider medication intervention, but this is not always successful.
Denial is less a behavior than a thought process, although denial about having memory impairment, or denial of its severity can lead to extremely challenging situations. Denial is very common at some point in the course of illness, and for some individuals it remains prominent throughout. It is an important component of the “discordance” which so commonly occurs between the person with dementia and his or her family (see p.
Typical expressions of denial are, “I don’t have any problems with my memory”; “I only remember what I want to remember”; “I don’t need to know what today is because I’m retired” or, “Lots of people my age have trouble remembering”.
Denial involves minimizing not only the facts of the situation, but also the implications of those facts. For example, someone may acknowledge that they have Alzheimer’s disease, but feel that they can nevertheless drive from here to a distant city on their own, because they have always been a good driver, and they have a map in the car.
Denial can lead to not wanting to go to the doctor or take medication; not being willing to accept some of the restrictions on autonomy which would be appropriate given the level of impairment; or not wanting to even consider giving up driving. People with any degree of cognitive impairment are at a greater risk for having an auto accident, but they are notoriously inaccurate in assessing their own driving abilities and almost always state that they are an excellent driver (see p. 211 for more information about driving and dementia).
Denial is a psychological phenomenon. Psychologically, people deny unpleasant realities. This process occurs unconsciously. Understandably, the person doesn’t wish to acknowledge something that, deep down, is known, but which causes feelings of shame, weakness, fear, or loss of control. Denial is an effort to maintain self – esteem, and some degree of control.
A related neurological concept is anosognosia, which involves damage to certain parts of the brain. This can lead to the inability of the person to see him or herself clearly and accurately. Both psychological denial and anosognosia are common in Alzheimer’s disease. They are difficult to differentiate, but are separate phenomena which together can lead to considerable unawareness of illness.
Having confrontations about the individual’s memory problem is rarely helpful, and can lead to arguments, hurt feelings, and more defensiveness. It may be necessary for caregivers to state, “We see this differently.” It may also be helpful to say to a loved one who, for example, insists he can be left home alone for the weekend that while perhaps he would be fine, it will make the care partner feel better to have someone stay with him; otherwise the care partner would worry too much about him. This turns the problem into the care partner’s supposedly excessive worry, rather focusing on the cognitive difficulties of the person with dementia. At a time when the person is relaxed and not defensive, it may help to empathize with him or her how difficult it is to have these problems. This could lead to a productive discussion of the situation (some “breaking down” of the denial) or it could lead to just more anger if the person isn’t ready to deal with the situation.
Denial in the family and the care partner can be very strong as well, and will certainly make it hard if not impossible for the person with dementia to give up his or her own denial. Lessening or eliminating denial in the care partner or family is a necessary first step in lessening or eliminating denial in the person with dementia.
At times, it can be helpful to have a family meeting, perhaps also involving close friends, clergy or other persons who are highly regarded by the patient. It will be unsuccessful unless all participants are very clear in the message that is given and very consistent with each other in their views of the person with dementia; the family (and close others) needs to speak with one voice. This meeting is like an “intervention” for the alcoholic who is in denial, and can make a very important difference in getting treatment started, although it can be excruciatingly hard for family members. If it is done with extensive planning ahead of time, and with great sensitivity (but also firmness) it can get the message across without the person feeling excessively “ganged up” on, or losing self esteem.
It is vital to remember that the goal of such an intervention or other effort to break down denial is not to get the person to “admit” what is wrong with them, but to agree to take certain actions (go to the doctor; take medication; give up driving; accept a sitter at home, and so forth). It may be very difficult, or even impossible to have the person to acknowledge that he or she has a memory disorder. “Admitting” the memory disorder may be too humiliating for the individual. It is more important that they develop a willingness to do what is necessary for care.
Medications are generally not helpful for denial.
Depression, in one form or another, is one of the most common neuropsychiatric symptoms accompanying cognitive impairment. It is hard to imagine why anyone with dementia, and any degree of awareness, would not feel depressed.
Depression, broadly speaking, can be understood it two ways: first, as a physiologic condition brought about by damage to those areas of the brain that control mood, and second, as a psychological reaction to the enormous losses that result from the disease.
Both explanations are accurate, and complementary.
Although a large percentage of people with Alzheimer’s disease and other dementias develop significant depressive symptoms, it can be difficult to make a diagnosis of depression, for a number of reasons. Older individuals often have a variety of physical symptoms that may be similar to certain symptoms of depression (e.g., fatigue, loss of energy, poor concentration, preoccupation with aches and pains) and so the symptoms of depression may be mistakenly attributed to the individual’s chronic physical illnesses.
People with dementia who have depression are often not able to clearly express their internal mood state, if indeed they even are aware of it; indeed, many older persons with depression will deny feeling sadness, for a variety of reasons, whether or no the have dementia. People with cognitive disorders will frequently express depression in indirect ways; rather than talking about feeling unhappy, they may be irritable or even aggressive toward others.
One of the most reliable indicators of depression in the person with dementia is the presence of anhedonia, or the inability to experience pleasure. There may not be complete anhedonia, depending on the severity of depression; there may simply be a diminished sense of enjoyment with activities that once were pleasurable. Individuals appear to be merely “going through the motions;” they may derive some pleasure from a particular activity, but much less than at an earlier time when they were not depressed. It is important to distinguish apathy from depression, although this can be challenging at times, and both can be present at the same time.
It is common, particularly in the early stages of disease, for people to complain that they feel useless. It is important to take these expressions very seriously. The person with dementia is expressing a feeling of dissatisfaction with himself or herself and their current situation. It is helpful for the care partner to take the position that while these feelings of frustration and despair are very understandable, he or she will do whatever is possible to help make life meaningful and enjoyable, for as long as possible. Finding a way to help the person feel a sense of usefulness can be extremely therapeutic. It can be a difficult challenge to identify tasks that the individual can achieve, and are not infantilizing. Perhaps it might include sweeping the garage, weeding the garden, dusting the furniture, or drying the dishes, for example. Being responsible for pet care can be a great source of pleasure and a sense of usefulness for someone with dementia. This could involve feeding and walking the dog, changing the cat’s litter box and feeding the cat, and so forth. Some oversight may be needed depending on the degree of cognitive impairment. Having small grandchildren around can be very helpful, as they can often bring much pleasure to the person with dementia. In addition, it can be emphasized – accurately – how important it is for the grandchildren to have a chance to spend time with their grandfather or grandmother. The family should encourage the person with dementia to think of some realistic change in their current situation that might make them feel more useful. This may uncover some very specific concerns that need to be addressed.
Feeling Like a Burden
Another common complaint of people with Alzheimer’s disease or other form of dementia is that they feel like a burden to the family. Nearly all people with dementia express this at one time or another, but when it becomes a major, or very frequently voiced concern for the afflicted person, it needs to be addressed. Most family members will deny that the person with the disease is a burden, even if that may not be true, and the person with dementia may be astute enough to recognize this. While it is important for the care partner and family not to blame themselves for the fact that the person feels like a burden, it may be useful for them to look for ways the person with dementia can be helpful and engage in simple tasks around the home that might make him or her feel less burdensome.
Some care partners who are not happy with their role may even want the afflicted person to realize how burdened they do feel, in order to get the person with dementia to express more gratitude for all that is being done. This is manipulative, guilt – provoking, and usually ineffective. It is very understandable that family members may wish their loved one would be more overtly grateful for the care and assistance they are receiving.
Indeed, some people with Alzheimer’s or other form of dementia are quite verbal about their gratitude, and this is usually very rewarding to the care partner. Unfortunately, however, many people with the disease are not able to recognize the degree of care and assistance being provided, and are not able to express much gratitude for it.
When the person with dementia expresses that he or she feels like a burden, it can sometimes be helpful to remind him or her that, in reality, the care partner feels great satisfaction and sense of reward for being able to give care. This type of statement does not deny that there may be burdensome elements in providing care – it would be dishonest to imply otherwise – but the emphasis is on the pleasure and gratitude that the family member feels in being in the position to be able to provide this care. This may be especially true if the primary care partner is an adult child of the afflicted individual; then the care provided is merely a reciprocation of care he or she received earlier in life. This approach can sometimes be helpful in reducing the discomfort and guilt the person with dementia feels about needing care. But because of the memory impairment, these comments may need to be made repeatedly.
Using Antidepressants for Depression in Dementia
What about antidepressant medication for the depressed person with Alzheimer’s disease or other type of dementia? Certainly not every person with dementia who is sad about the situation requires medication, and medications should never be used simply as an alternative to trying to understand the emotional distress of the person with the disease. But when necessary, antidepressants can be extremely helpful for people with dementia who suffer from depression. What characteristics might make antidepressant therapy advisable?
• Severity of the Mood Disturbance
One of the factors that might lead to the use of antidepressants is simply the severity of the low mood. Clearly this involves a subjective judgment, but it stands to reason that an individual who is more severely depressed may more urgently need medication than someone whose distress is more mild.
• Pervasiveness of the Depressed Mood
When depressed mood is present all of the time, medication is likely indicated.
Someone who may have some very sad moments but also feels some genuine sense of happiness at other times may be less in need of antidepressant medication than someone whose mood never improves spontaneously.
Closely related to the above factor is the presence or absence of anhedonia, which refers to the inability to experience pleasure. Even very severely demented persons who are not depressed are able to experience and demonstrate positive, pleasurable feelings. It might be a visit from a grandchild, a meal, or some other activity that genuinely pleases the person who is otherwise quite out of contact.
But when someone with Alzheimer’s disease or other dementia is unable to experience pleasure in anything, or unable to look forward with positive emotion to any future events, then there is almost certainly a significant degree of depression present that may require medication to improve. Of course these considerations do not apply to someone who has just suffered a significant loss or is in acute pain from an injury or medical condition. But absent those factors, the presence of anhedonia is almost always a sign of major depression, and a strong indication of the need for antidepressant medication.
People with dementia who become significantly irritable may have an underlying depression that will respond well to antidepressant medications. Irritability is one of the more common symptoms of depression in persons with dementia, and it can, of course, make caring for the person much more difficult than otherwise.
• Significant Loss of Appetite or Significant Weight Loss
It is common for persons with Alzheimer’s disease to lose a few pounds a year; but if weight loss is more rapid than that and appears to be due to loss of appetite, the cause may be depression; antidepressant medications (particularly certain medications that can increase appetite) can be quite helpful in this situation. In very late – stage patients, weight loss may be significant due to a loss of the ability to swallow, and this is often an event that heralds the end of life. This late – stage weight loss is different from depression, and is not responsive to antidepressants.
• Frequent Crying
Some people believe that frequent crying is normal for people with dementia.
This is certainly not the case, any more so than for people who do not have dementia. While some emotional lability is common in the moderate and later stages of the disease, frequent crying certainly needs to be addressed and may be a symptom that will respond to antidepressant medications.
• Diurnal Mood Variation
Although this is not seen in all cases of depression, some people with depressive illness have a diurnal pattern of feeling their worst in the morning and progressively less depressed as the day goes on, so that by nighttime the mood is significantly improved. However, by the next morning, immediately upon awakening, the individual again feels terrible. Depending on the severity of the depression, mood may not begin to improve until afternoon or early evening, but the pattern repeats itself every day, usually seven days a week. When this symptom is present, the individual is likely to need anti-depressant medication to improve.
• Rapid Functional Decline
Alzheimer’s and most other forms of dementia are progressive; that is, cognitive and functional symptoms gradually worsen. However, when decline in cognition or function occurs more rapidly than one would expect on the basis of the disease alone, one of the most common causes is depression. When there is a concern about unusually rapid decline, there should be a thorough evaluation by the treating physician. In the absence of physical causes, it may be that the hastened decline is due to depression. Usually there are other signs of mood disorder as well, but these can be difficult to discern at times. Treating depression – often with medication – may help stabilize the swift descent and possibly even improve functioning, at least to some degree.
• Disinhibited or Socially Inappropriate Behaviors
While some degree of disinhibition occurs in most patients with dementia, loss of judgment and impulse control can lead to a variety of very difficult, inappropriate behaviors in some. Disinhibited behaviors are extremely common in frontotemporal dementias, but can occur in persons with any type of dementia.
Symptoms of disinhibition can include relatively minor actions such as leaving the bathroom door open when using the toilet, or appearing in front of others in an inappropriate state of undress. Other examples are very poor table manners (spitting food out on the table or the floor, for example); making off-color remarks or swearing when these weren’t part of the individual’s previous style; excessive friendliness with strangers; making lewd remarks, or engaging in sexually inappropriate behaviors.
The individual may have no idea that what he or she is doing is wrong, or inappropriate; or he or she may understand that the behavior is something that others are upset by, but the person with dementia no longer seems to care, or may even seem amused by the reaction of the caregiver. He or she may offer flimsy excuses, showing no genuine remorse whatsoever. Of course, this does not mean that the person has somehow become morally corrupt; these behaviors and attitudes are an indication that the disease has damaged the individual’s judgment and sense of social appropriateness.
Dealing with Disinhibited Behavior
It is important for the caregiver to realize that it is not the person, but the illness that is to blame for these symptoms. Disinhibition is a common problem in dementia and it can occur in the most morally upstanding, virtuous individuals. The hardest task for the caregiver may be to refrain from feeling morally offended or mortified by the behavior.
Using firm redirection, distraction, and humor, and avoiding situations in which the behaviors are likely to occur (for example, by utilizing a male aide if the patient tends to make sexual overtures to females who are hired to assist him with care) may be useful approaches. It does little good to ask the person not to engage in a certain behavior because it is “wrong”; if the person were capable of that level of understanding, or concern, it wouldn’t be happening in the first place. It is not a moral issue; it is a brain damage issue.
It is important to control disinhibited, socially inappropriate behaviors not only because of the very negative impact they can have on others, but also because of how they cause others view the individual with dementia. Such behaviors compromise the person’s dignity. When the person with dementia is no longer able to be concerned about these issues, due to the severity of cognitive impairment, it becomes the care partner’s job to try to maintain and protect the dignity of the person with dementia.
Medications may or may not be helpful in dealing with disinhibited behaviors, but because of how disturbing these behaviors can be, a consultation with the clinician may be useful.
Hallucinations are less common than delusions, but occur in persons with a variety of dementias. Most often, they are visual (seeing things that are not there), but can also be auditory (hearing things); tactile (having a physical sensation of something on the skin or in the body); olfactory (smell); or gustatory (taste). Persons with schizophrenia frequently have hallucinations, also, but these are most commonly auditory.
Hallucinations occur in all forms of dementia, but are particularly common in Lewy Body dementia, and dementia in Parkinson’s disease.
At times, the development of hallucinations in someone with dementia is an indication of an underlying acute medical illness (such as a urinary tract infection) that may not be terribly serious by itself but is causing the individual to become delirious. Visual hallucinations are common in delirium.
The most common hallucinations in dementia are seeing people in the house; most often this occurs in the evening or at night after going to bed but before going to sleep, or upon awakening during the night for some reason, such as to go to the bathroom.
Hallucinated people almost never speak. The same images may return every day, or there may be a variety of images seen. Sometimes they are bizarre, but at other times they are quite ordinary. Visual hallucinations of animals often occur, as well; these may be ordinary images or may be animals that are not indigenous to the area, such as elephants, giraffes, and so forth.
Dealing with Hallucinations
Persons who are hallucinating are absolutely convinced about the reality of the images, at least initially. If they continue for some time, the individual may develop awareness that “some of them” are figments of the imagination, but often he or she will insist that at least some of the hallucinations are real. At other times, the individual is completely confused about whether or not the experiences are real.
As with delusions, it does no good to argue with someone as to whether or not the hallucinated people are “really” there. It is best to say something like, “No, I don’t see them, but I understand that you do.” It is not a good idea to agree that you do see them.
If the patient does openly question whether or not they are real, that would be a good opportunity to say, “I don’t think they are really there; maybe it’s your mind playing tricks on you” and to focus on the emotional response to the experience – for example, how confusing, or upsetting it is, rather than the reality or unreality of the experience itself.
Antipsychotic medications can sometimes be helpful in eliminating hallucinations, or lessening their frequency and severity, but given the side effects of antipsychotic medications, they should only be used if the hallucinations are distressing to the individual, or interfering with his or her functioning (e.g., the person won’t go to sleep at night because he or she wants to make sure the imagined people don’t enter the room during the night).
Irritability is a common symptom of depression in persons with dementia. It can also reflect an underlying paranoid trend. As with so many other behavioral symptoms, the care partner’s primary task is to not take the irritability personally (even though it may be largely or exclusively directed at the care partner). Responding to it with humor can often be helpful, and help defuse the situation.
Occasionally, someone with dementia may become irritable in response to a care partner’s irritability, or “care partner fatigue”. It is useful to consider whether or not there has been any change in the care partner’s behavior or attitude that could have prompted this new symptom. If the person is newly irritable, other symptoms of depression, or symptoms of paranoia should be considered. Irritability may or may not respond to medication, depending on its causes.
A variety of sleep problems commonly occur in Alzheimer’s disease or other dementias.
This is probably the most common sleep disorder in persons with Alzheimer’s or other dementia. The individual seems to need an inordinate amount of sleep at night, and/or frequently naps during the day. This symptom may reflect underlying apathy; when left to his or her own devices, the person with apathy does very little, and is prone to doze, no matter how much sleep he or she is routinely getting. If this is the case, then the person may benefit from more planned activities. It may also be that the caregiver needs to accept the increased need for sleep as a consequence of the illness, and not make inordinate efforts to have the person sleep less.
At other times, patients sleep excessively as a way to withdraw from interactions or implicit demands for functioning and cognitive engagement of which they are no longer capable.
Patients who are sleepy during the day, despite having adequate amounts of sleep at night may be experiencing side effects of medications that can cause somnolence as an adverse reaction.
Finally, patients who sleep excessively during the day may have a sleep disorder, such as sleep apnea. This is to be suspected if there is loud snoring at night, although the actual diagnosis of sleep apnea usually needs to be made by a sleep specialist. This is important to pursue if there are suspicions of sleep apnea, as this condition can lead to worsened cognitive abilities, as well as other medical complications.
This would include awakening at night, and thinking it is time to get up. It also includes multiple awakenings during the night, other than for the bathroom, with staying up and wandering about the house, often in a very confused state. This can be due to the disruption of the sleep-wake cycle that can occur as part of Alzheimer’s disease, but could also reflect a significant degree of anxiety. In individuals with a reversed sleepwake cycle, there is a tendency to be up a great deal of the night, and to sleep during the day.
Managing Sleep Problems
It may help to limit (but not totally eliminate) daytime napping, particularly naps taken in the afternoon and certainly naps taken after supper. It is also important to ensure that there is adequate activity during the day, and some opportunity for walking or other exercise, commensurate with the persons overall physical status. Getting outside every day, weather permitting, can be a good routine to develop, one that will help with a variety of matters including sleeping better at night.
It is especially important to have alarms on the doors, or other devices to make it harder for the individual to leave the house unsupervised during the middle of the night without awakening the caregiver.
Persons who are up frequently at night can be a very severe drain on the caregiver, particularly if it is an adult child or younger spouse who goes to work during the day.
Medications may or may not be useful, and almost any medication used for sleep has the potential to worsen cognition, or lead to gait unsteadiness, with resultant falling.
Sundowning refers to an increase in confusion or agitation, or other change in behavior, beginning any time in the second half of the day. It may take the form of pacing; asking repeatedly to “go home”; general restlessness; irritability or frank agitation. It may merely present as increased disorientation, forgetfulness, difficulties with tasks that can be performed competently earlier in the day, or other manifestations of greater cognitive impairment. While there are a number of theories as to why sundowning occurs, it probably has nothing to do with the actual setting of the sun, but has that name because the symptoms typically begin in the late afternoon or early evening. Sundowning is a common phenomenon seen in persons at home, in the hospital and in long-term care facilities. For many persons, the increase in confusion or other behaviors is noticeable but relatively mild, and does not require any special interventions. For others, there are dramatic changes that occur in the latter part of every day, which may need nonpharmacologic or even pharmacologic interventions to ameliorate.
Varying hormonal levels during the course of the day, as well as fatigue, hunger, lack of sufficient sleep or exercise, and possibly other factors may contribute to sundowning.
The fatigue of the caregiver late in the day is also a factor that may make interactions more challenging at those times.
Dealing with Sundowning
Nonpharmacological interventions should include seeing that the individual gets adequate sleep at night; has exercise, ideally outdoors in the daylight during each day, and has a small meal or snack in mid afternoon if hunger seems to contribute to the onset of the symptoms. It may be a good idea not to schedule cognitively or emotionally demanding activities late in the day, if at all possible. The late afternoon hours may be an excellent time to have a comforting sensory activity, such as a walk, a car ride, listening to music or having a massage.
Occasionally, it is useful to give a dose of medication every day, before the symptoms begin, when these occur nearly every day at a predictable time. Otherwise, an “as needed” dose of medication can be given if and when sundowning behaviors start. If the medication is given immediately when the symptoms begin (or right before), it is more likely to be helpful. If medication administration is delayed until the individual is already quite agitated or confused, the medication may seem “too little, too late”, and have a negligible effect.
Wandering is a potentially fatal behavioral symptom of Alzheimer’s disease and other dementias. Every year, many individuals with dementia wander, and substantial numbers perish, particularly in the colder months. Even wandering a few dozen yards into the woods, or down a little used road, can be fatal.
All persons with dementia who are ambulatory are at risk to wander. Having no history of wandering is certainly no guarantee that it will never happen. Every person who wanders for the first time has no history of wandering previously.
Dealing with Wandering
Wandering is generally not treatable with medications; behavioral interventions and monitoring, along with certain mechanical devices, are the best protection from dangerous wandering. Simple devices like a latch hook on doors, placed high on the door out of the usual line of sight, and sometimes covered with a cloth, can be helpful to keep someone safe who may otherwise get up in the night and wander outside.
However, it is critical that any locking devices can be easily released, in case of fire.
In addition, there are an increasing number of electronic monitoring devices available.
These are generally based on GPS technology. Electronic monitoring devices raise privacy concerns in some quarters; but obtaining and using such a device for the person with dementia can be a life-saving investment, and one that can sometimes significantly delay or avoid placement in a long term care facility.