to Alzheimer's Victims
By Howard Gruetzner, M Ed. Director of Regional Aging Services
1. The person asks the same questions over and over.
Common response: The person is not listening or trying to remember; she wants attention or is trying to annoy you; she should be able to control this.
Alzheimer's interpretation: The person is suffering memory loss, which in turn creates a strong sense of insecurity and uncertainty. She may be asking the same questions repeatedly because she seeks reassurance and security, or perhaps your earlier answers seemed vague or unclear. She may sense you are avoiding the answer, which could heighten her sense of insecurity.
In advanced stages, memory impairment may be so severe that she does not recall asking the question, or she may feel threatened by your earlier answer. For example, if she asks repeatedly when she is going to the doctor, the doctor may be a source of insecurity for her.
2. The person's personality appears to have changed.
Common response: She is going crazy or having a nervous break down; she has lost all self-respect and pride.
Alzheimer's Interpretation: Personality changes are characteristic symptoms of Alzheimer's. Often, these changes are observed prior to any clear impairment of memory loss or intellectual abilities. Brain impairment associated with Alzheimer's can radically change the way the person acts. Additionally, personality characteristics can be exaggerated in early phases of the illness.
Subtle changes in personality can represent an early signal that a problem exists. If the person realizes that she is acting in ways which are not like her, she may fear she is having a nervous breakdown or losing her mind.
Eventually the brain impairment erases most traits of individuality. Some examples of personality changes are:
New Traits to appear:
Wooried, easily upset
3. The person does not do what she says she will or leaves a task uncompleted.
Common response: She is lazy and not really trying; she is lying to you; she wants your help with everything.
Alzheimer's Interpretation: Memory impairment makes it more difficult to do something that was agreed upon. For example, seeing a shirt laid out on the bed may no longer trigger the idea that the person should put it on. Memory abilities cannot be separated from intellectual abilities, such as reasoning, and both facilities are being lost.
4. The person denies her memory problems and makes excuses for mistakes, blames others, or seems unaware of the problem.
Common response: The person is not being honest; she should face the problem and accept responsibility for her own mistakes; she is getting old and senile.
Alzheimer's Interpretation: Denial of memory problems is a very common response to Alzheimer's. Initially, denial is a necessary defense. It protects the person from frightening changes that are difficult to accept. If she makes excuses or blames others, she may be desperately trying to explain the memory impairment without directly confronting the problem.
5. The person insists she does not need help because she has always done things for herself; she becomes angry when you offer assistance.
Common response: She is stubborn and unreasonable; she is rejecting you personally; her anger is unfair.
Alzheimer's Interpretation: The person's refusal of help is an effort to maintain independence. Anger directed toward you may really be caused by her frustration with the illness. Her self-worth and self-esteem are threatened. Later, such denial may show she has lost a grasp of her own needs and problems.
6. The person mishandles her money and monthly bills; she accuse you and others of stealing from her.
Common response: She is inconsiderate and irresponsible; she is unfair and will not face the facts; she is lying and avoiding the issue.
Alzheimer's Interpretation: Having and handling money is one of the symbols of a persons independence and competence. The person may blame others for her mistakes because she is trying to protect her self-esteem and maintain her independence.
Early problems with memory and reasoning abilities make it difficult to handle more complex financial matters. Trying to preform calculations, even on paper, becomes frustrating. Accusing others of taking money is one way in which the person fills the gaps in her memory and protects her self-esteem.
7. The person tells ridiculous stories or says unusual things.
Common response: She is lying or being mean; she is going crazy or getting senile.
Alzheimer's Interpretation: Such stories are easy to take personally, but they are rarely malicious. As memory and reasoning abilities continue to decline, larger gaps are left in the person's perception of reality. It is harder for her to explain or understand what is happening because her grasp of logic is deteriorating.
Ridiculous stories and obvious untruths may be attempts to fill in the blank, to explain what she cannot understand.
If the person believes her own stories, the things she says may cause real agitation, anger, and fearfulness. If her stories place blame on others, she may be trying to defend her self-respect and integrity.
Some of the unusual things a person says may also represent difficulties in speech. Finding words to explain things or even name things correctly becomes difficult as the disease develops. The person may be able to manage only fragmentary ideas or statements.
8. The person wants things to be done immediately; she wants you to do everything.
Common response: The person is being inconsiderate; she is acting childish and overly dependent; she is attempting to control you.
Alzheimer's Interpretation: If the person was demanding before the brain impairment, the disease could accentuate such traits. In addition, her loss of memory may have triggered anxiety and panic, and her demanding or overly dependent behavior may be an attempt to gain control. Her anger may mask fear.
9. The person repeatedly talks about past experiences.
Common response: She is living in the past; she does not want to relate to the present.
Alzheimer's Interpretation: Although the brain-impaired person's ability to recall recent events is becoming less reliable, she still may remember more remote material from the past. This material remains accessible to the person longer and can provide a more meaningful basis for self-esteem and identity. The present has become more threatening and difficult to accept emotionally. The person may also be losing her ability to relate to time and may be confused about the relation of past and present.
10. The person's abilities fluctuate from day to day or hour to hour; she remembers some things but not others.
Common response: She remembers what she wants to; she is not trying to remember; she must be getting old and senile.
Alzheimer's Interpretation: It is normal for the memory of all Alzheimer's patients to fluctuate in this fashion. It is a mistake to believe that improved memory on a given day means the condition is improving, however. Material that is unpleasant or threatening may be more easily forgotten.
11. The person accuses you, family and others of doing things or makes up stories about you.
Common response: She is becoming paranoid, losing her mind, being unfair, becoming unmanageable. or trying to hurt or embarrass you; she is getting senile.
Alzheimer's Interpretation: Such problems are other ways in which brain impaired persons react to the insecurity created by memory loss. In this case, the problem more directly involves the caregiver, since the victim is most likely to accuse her spouse or others close to her,
Arguments tend to reinforce belief. Confrontations and other negative approached tend to worsen the situation rather than help it.
12. The person has hallucinations or bizarre and frightening delusions.
Common response: The person is mentally ill.
Alzheimer's Interpretation: Progressive brain impairment affects an individual's ability to interpret information accurately. Hallucinations are often misinterpretations of real sights and sounds. Delusional beliefs represent an attempt to fill in gaps of information and explain what happened. For example, if a person says someone is knocking on the walls, and is trying to break into her house, she may really have heard a tree branch against the house. Insecurity, so often associated with progressive brain impairment, leads the person to interpret events from a fearful and threatening perspective. Suspiciousness is a common response to a person's diminishing control of her world.
When a person seems to be talking with someone who is not present, she may actually see or hear the person, but she may be involved in a delusional belief, such as thinking a deceased person is alive or talking.
A number of other problems contribute to hallucinations and delusional beliefs. These include medical problems such as infections, changes in diabetic conditions, and pernicious anemia. Medications also must be evaluated.
Other conditions that impair a person's ability to receive information can contribute to hallucinations or delusional beliefs. Hearing and visual impairments are examples.
13. The person is very restless, cannot stay still, or is easily agitated.
Common response: Something is bothering her; she does not have anything to do.
Alzheimer's Interpretation: As the disease progress, agitation and restlessness commonly accompany the insecurity created by the person's diminished abilities to cope. Denial and rationalization, which preciously helped to block out awareness of functional losses, become less successful protective devices as her problems become more pronounced.
Some restlessness may suggest anxiety and underlying fears, though the person cannot always explain these feelings. Too much stimulation can contribute to anxious and agitated behavior. Medication given to control these symptoms should be carefully monitored, as it can sometimes intensify the symptoms it was prescribed to decrease.
14. The person constantly follows you around.
Common response: She wants too much attention; she is overly dependent; she will not entertain herself; she is suspicious and distrustful of you.
Alzheimer's Interpretation: This problem develops from the fear and insecurity caused by the person's memory impairment; watching or following the caregiver provided greater security. Such behavior also promotes her sense of belonging and alleviated her sense of isolation, which might otherwise intensify anxiety and fear.
Mistrust or suspiciousness may develop because the person is less sure of what is happening. Her interpretations of information and her reasoning capabilities are less reliable. Some persons develop paranoia or more intense suspiciousness as a response to a more threatening world outside themselves.
15. The person's moods change for no apparent reason. She gets upset and even aggressive if cornered.
Common response: The changes are related to medication, changes in her condition, or something you have done; she is losing her mind and cannot control her emotions.
Alzheimer's Interpretation: Such mood swings are often related to changes in the body and brain as the disease progresses. The mood swings also can be precipitated by thoughts and ideas the person has but is unable or unwilling to express.
The person may also be experiencing a catastrophic reaction, which means that the person is overwhelmed by too much happening to quickly, has become extremely upset by her confusion and loss of control, and cannot respond adequately to the situation.
16. The person refused to bathe and groom; she says she has already done so.
Common response: She does not care about her personal appearance; she is being stubborn and uncooperative; she is lying.
Alzheimer's Interpretation: Regular bathing and attention to personal hygiene lose their social significance for persons with brain impairment. Social judgment and awareness diminish. Since taking care of personal hygiene is the most basic sign of independence, however, it becomes threatening to adults to become dependent upon someone's help to bathe and groom themselves.
Bathing can become embarrassing to the brain-impaired person. Being nude, closed in, and helpless in a bathtub or shower created a sense of vulnerability that may be frightening. Because the person is accustomed to bathing regularly, it may make perfect sense in her mind to claim she has already bathed.
17. The person fails to recognize familiar persons, places and things.
Common response: She is getting much worse and is terribly confused.
Alzheimer's Interpretation: Due to a kind of brain impairment known as agnosia, the person is gradually losing her function to recognize. What her eyes see no longer can be put together into the previously meaningful and understandable picture, Thus people, places and things she has been around all of her life now truly appear unfamiliar.
18. The person wanders around at night or seems to be looking for something.
Common response: She is confused and does not know what she is doing; she is being inconsiderate.
Alzheimer's Interpretation: Wandering may occur when the person is disorientated in the middle of the night and has forgotten her reason for awakening. The sleeping difficulties may be caused by frightening noises, hallucinations, or nightmares. When there is a lack of structured daily routine, the difference between night and day is less pronounced.
19. The Person refuses to eat, or she eats very little.
Common response: She has a poor appetite; she is too picky about food; she needs to be more active.
Alzheimer's Interpretation: As Alzheimer's progresses, it is common for a decrease in appetite to occur. Eating binges and desire for sweets also occur, but greater concerns are created by the refusal to eat. Often persons fail to eat because they believe they have already eaten or because they simply forget what they are doing. This is more likely to occur with persons who live alone or in situations where structured daily routine is minimal. Brain impairment also contributed to difficulties in using eating utensils. Swallowing can be difficult.
20. The person does not seem to care for you anymore, and she say's you do not love or care about her.
Common response: She no longer loved and appreciated you.
Alzheimer's Interpretation: As brain impairment progresses, the person's awareness of the people around her naturally diminishes. She becomes less expressive and makes fewer gestures of appreciation. When she questions whether you love or care about her, she may be seeking reassurance to counteract her sense that she is losing you due to her diminishing abilities.
21. The person's hands and arms shake; she stumbles and is unsteady when she walks.
Common response: She is nervous, she has visual problems; her arthritis is getting worse.
Alzheimer's Interpretation: While nervousness may be responsible for some of the shaking, other causes also should be considered. Side effects of medications prescribed for severe agitation, delusions, hallucinations, and sleeping problems may be the source. Stiffness also could be caused by these medications.
In other cases, tremors may be directly related to the brain impairment. Rapid jerking movements of the limbs or even the body can occur. These are called myoclonic jerks and should be evaluated by a physician.
Loss of mobility and coordination of large [gross] and small [fine] movements occur with the disease. These coordination problems contributed to difficulties with all motor skills. Weakness, poor balance, and stooped posture make walking difficult; likewise, difficulty in getting up from a chair leads to long periods of sitting. Prompt medical attention should be sought as these conditions escalate.
Some persons with Alzheimer's may exhibit symptoms suggestive of Parkinson's disease. This neurological disorder can coexist with Alzheimer's, but it is difficult to differentiate when Alzheimer's is in its advanced stages.
22. The person sits doing nothing for long periods of time.
Common response: She should be doing something worthwhile; she should be more active; she is bored, lazy, or depressed.
Alzheimer's Interpretation: As brain impairment affects memory and intellectual abilities, spontaneous and self-initiated activities diminishes. Apathy and a lack of interest in what is going on develops because the person's ability to partake in daily life is compromised. Her abilities to plan and carry out purposeful activities are likewise affected by diminished cognitive abilities. Later, she may develop problems with walking and standing. More positively, sitting quietly ,ay be a welcome relief for her from the increasingly stressful demands of daily living.
23. The person wets or soils herself.
Common response: She is not trying to control her bodily functions and does not care anymore; she wants your attention; she is trying to get back at you for something.
Alzheimer's Interpretation: These problems are not uncommon in more advanced stages of Alzheimer's. The person is less aware of the need to relieve herself and does not associate this need with the bathroom. Memory problems and perceptual difficulties make it more difficult for the person to find the bathroom. At night, disorientation and confusion make it more difficult to use the bathroom.
24. The person wanders aimlessly.
Common response: She is disoriented and lost; she does not have anything to do.
Alzheimer's Interpretation: Wandering is a problem for people who have brain damage. Because of the potential consequences of wandering, it is a behavior with potentially dangerous outcomes. The person could fall or become lost in the neighborhood. Wandering cannot be easily understood if one sees it as aimless. In fact, what appears to be aimless wandering is not aimless activity in many cases. A brain damaged by Alzheimer's merely has difficulty determining the purpose or goal of such activity. The impaired person may not be able to communicate; thus the caregiver may find that the purpose of the wandering becomes clearer through observation. Often people who are thought to be wandering aimlessly follow the same path repeatedly. This may be more evident in institutional settings. Along the path are sources of positive stimulation [outside views, water, coffee, social contact]. Wandering can also be an effort to avoid or escape adversive situations, such as dark or noisy areas and more isolated spots which create a strong sense of insecurity.
Other explanations for what appears to be wandering behavior include the following possibilities:
1. The person is looking for something she has lost.
2. The person does not recognize her surroundings and may be looking for something familiar. [This may be an example of agnosia--failure to recognize familiar persons, things, places---or a reaction to new or changed physical environment.]
3. The person is more confused, restless, or agitated as a reaction to tranquilizers or other medications.
4. The person may be more confused during certain parts of the day, for example, early morning or late evening.
5. The person may be confused as a result of sensory impairment. Because she hears or sees poorly, she cannot comprehend sights and sounds accurately. These types of impairments can also result from brain damage. In this case, the individual cannot process visual and auditory information correctly, and her perceptions are distorted.
6. The person may wander as a response to stress. She may walk away from upsetting situations and then become lost. A catastrophic reaction may precede the wandering behavior. Some persons may always gotten upset easily by a stressful situation and walked away from it.
Wandering is a major source of stress to most caregivers. Understandably they worry about it because of its potential harmful outcomes. Caregivers should take action to deal with this problem, or it will create more stress and heighten the need for supervision considerably. In the memory impaired person does wander way from home, notify the police department immediately. Having pictures of the person along with accurate information of such characteristics as hair color, height, weight, and other identifiers will increase the chances of the person being found quickly. Be sure to tell the police that the person is memory impaired, confused and so forth. You may offer suggestions on how the person may best be approached. If you know, tell the police about the status of the person when she left. Was the person upset or angry? It may be better for the caregiver to remain at home and have family or friends assist with the search so that someone is home should the person return.
(c) copyright 1996
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