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.
 
Relationship Issues
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.
 
Medical Issues
(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.
 
Distraction
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.
 
Activities
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
 
Aggressiveness
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.
 
Managing Aggressiveness
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.
 
Agnosias
“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.
 
Anxiety
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.
 
Managing Anxiety
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
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.
 
Managing Apathy
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
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
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.
183).
 
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.
 
Managing Denial
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
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.
 
Feeling Useless
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.
 
• Anhedonia
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.
 
• Irritability
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
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
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.
 
Sleep Difficulties
A variety of sleep problems commonly occur in Alzheimer’s disease or other dementias.
 
Excessive Sleep
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.
 
Disrupted Sleep
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
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
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.