Behavioral disorders and ways of coping
Family members of people with Alzheimer's discover that the behavioral manifestations that accompany the disease make caring for the patient, an already difficult task, even more difficult and sometimes even bring family members to a crisis and collapse.
Although the person does not appear sick on the outside. The face is the same, the gait, at least in the early stages of the disease, the same gait, but something is gradually emptying in him. Something is fading and everything that made the patient the same person familiar to his surroundings is gradually disappearing. Family members are forced to go through a grieving process even during the person's life, but the hardest thing of all is that they themselves sometimes become victims of the patient's persecutory delusions, or his verbal and sometimes even physical aggression towards them.
It should always be remembered that behavioral disorders are part of the illness, they are not intentional and do not arise from malice or coercion towards the supportive environment.
Therapists must control behavior as much as possible, in order to prevent the person from endangering themselves or others, and to enable a reasonable course of treatment.
Since January 2022, dementia diseases have been approved for indication (license) for medical cannabis.
The basic principles for coping methods:
Limiting problematic behaviors
The more dangerous the behavior disorder, the more severe the restraint should be. It should be remembered that physical restraint can worsen restlessness in some people, and is not recommended.
Assessing the circumstances that led to the behavior disorder
It is worth finding out whether this is restlessness resulting from physical illness or pain? A side effect of medication? Fatigue, anxiety or boredom. The language impairment in people with dementia can limit their complaints about the appearance of physical symptoms. In addition, it is necessary to consider whether this is not an expression of frustration resulting from difficulty performing a certain task.
Try to see the world from the patient's point of view.
The healthy person identifies himself and his world based on his ability to place himself in the space of time, in the geographical space, and according to his ability to place himself within society and among his family members. Our ability to place ourselves on the continuum of time and memory is essential to our identity. Alzheimer's disease gradually dims the spotlight with which we identify ourselves in these spaces. It is therefore not surprising to understand the anxiety that overwhelms the person in the face of a reality that is experienced as unfamiliar, and that in advanced stages of the disease does not even have the appropriate verbal means of expression. Thus, the person changes the identities of his relatives and attributes them a different identity out of the need to delineate a new and familiar territory for him. Sometimes this leads to paranoid thoughts toward that person who until recently was his son, daughter, wife and who is now a stranger living in his home, moving and taking his belongings. These thoughts can lead to expressions of verbal and sometimes even physical aggression.
Behavioral tunnel
Find ways to channel behaviors from problematic channels to more socially acceptable channels. If the patient tends to throw away the daily newspaper, it is recommended to try leaving yesterday's newspaper visible and this morning's newspaper hidden.
Reinforcing positive behaviors
People with Alzheimer's are in a constant need for reinforcement and encouragement. It is recommended to be generous in this area, including physical expressions such as a warm hug, a kind and soothing word, placing your hand on the person's hand, etc.
The most prominent behavioral characteristics among people with Alzheimer's
stubbornness
Stubbornness can be part of the personality traits of each of us. If we add to this basic fact the fading memory, decline in skills and anxiety about what is expected to happen, then this characteristic becomes and becomes emphasized. It should be understood that although the stubbornness of patients can sometimes drive the caregivers crazy - it is a manifestation of the disease. The patient becomes stubborn because he is afraid that he cannot cope with the task assigned to him or that he does not understand its meaning. A task such as: Go take a shower - can become a serious stressor because in the advanced stages of the disease it is too complex and abstract, and therefore an answer such as no, or passive or even active resistance - is the default on the part of the patient. It is worth making the task simple. Simply direct the patient to the shower and tell him: Take off your shirt. You can 'bribe' him. Even with a cookie. It is worth remembering that, unlike a stubborn child, where it is not recommended to use a "bribe" to avoid establishing a behavioral pattern, there is no such danger with a dementia patient. In the advanced stages of the disease, the patient will not remember that he is being bribed. If nothing helps, it is better to let the request go and raise it again later.
Setting sun syndrome
It is common to find behavioral changes in Alzheimer's patients that correspond to the daily morning/evening oscillator. Sometimes the patient is clearer and more cooperative in the morning and becomes confused and even aggressive towards the evening. It is not yet clear what underlies this phenomenon. However, fatigue is probably an important factor in its development. It is worth taking these changes into account when planning the activities of the patient and the therapist. It is worth reducing the number of stimuli towards the evening: the television on, the radio on, in addition to family gatherings, can make it difficult for the patient, whose attention at this stage of the day is impaired anyway. It is worth simplifying things as much as possible in the later stages of the day. It is worth concentrating activities that require cooperation with the patient for the morning hours.
vagrancy
Wandering is a hallmark of Alzheimer's disease. This behavioral manifestation can even be dangerous. Wandering usually results from getting lost due to memory impairment that makes the familiar environment foreign to the patient. The phenomenon is even more common when the environment changes and should be expected to appear in any situation of extreme change in the patient's lifestyle. Some patients can get lost while staying in a day care center and some during the night. Sometimes the wandering is for no apparent reason and sometimes it results from a feeling of restlessness that can also be secondary to medication. In order to reduce the chances of "escapes" from the care center, it is recommended to familiarize yourself with the place in the initial stages of the disease, and gradually increase the time spent there. This recommendation can be applied in any case of extreme changes.
In order to reduce the dangers associated with wandering, it is recommended to close windows and doors, including interior ones, and to use safety gates, such as those used to secure small children. It should be remembered that this measure, although not seen as effective for a healthy person, can certainly constitute a limiting obstacle for patients.
It is worth trying to use open shoes or slippers, especially at night. Some patients wander only when they are locked in their shoes. If wandering cannot be prevented, it is worth ensuring the patient's identification by attaching an identification card with his details and illness, which is fastened to the lapel or back of the clothing, if the patient tends to remove this label. In addition, it is worth informing the immediate environment, including nearby stores, lottery booth vendors, etc., about the patient's identity and illness. There is no place for shame. This action can save the patient's life when wandering. Use of physical restrictions - only in consultation with the doctor and social workers. Usually, this refuge brings the patient closer to being transferred to a nursing home.
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Sometimes the dementia patient becomes fixated on a particular task and does not stop performing it, such as folding towels, washing hands, walking, or turning the light switch on and off. If the action is not dangerous, then there is nothing harmful in the action itself, unless the caregiver feels that he cannot bear it any longer. If it is necessary to intervene, then a gentle touch and gently moving the hand away from the action itself while saying something suggesting performing another task can be very effective: "Thanks for folding towels. Let's feed the dog."
Hoarding, hiding, and losing objects
These phenomena are common among Alzheimer's patients. In order to deal with these behaviors, the caregiver himself must be organized. Essential items should be kept in a secure place. One should avoid leaving things scattered and make sure to have copies of keys or glasses. An organized home can prevent the patient from finding hiding places where he hides items. It is always a good idea to remember where the patient hides items. In most cases, he will return to these places in the future. It is a good idea to check the trash can before emptying it. It is surprising what can be found there.
Sexually suggestive behaviors
People involved in the care of Alzheimer's patients are sometimes concerned about the possibility of sexual expressions of behavior such as: exposing genitals, masturbation in public, harassing people and children, etc. These behaviors may occur, but it is worth remembering that they are not particularly common. Sometimes, underlying the expression that the public perceives as sexual expression, there is behavior that aims to express something completely different. For example, a patient who walks around naked on the balcony does so because he is hot, or because he forgot to get dressed. Exposing the genitals in public may express the need to urinate. In order to overcome this situation, clothing that cannot be easily removed can be used. Alzheimer's patients sometimes masturbate because it gives them a pleasant feeling. They have forgotten that this should not be done in front of everyone. In any case, the intention is not obscene. Sometimes the patient can harass his grandchildren and children of the opposite sex, with the underlying cause of this problematic behavior being an expression of affection towards a figure who reminds him of his partner when she was young, i.e. the result of a recognition disorder. If the therapist identifies problematic behavior such as those described, it is advisable to take the patient to a hidden place and handle the situation as peacefully as possible.
The patient as the therapist's shadow
At certain stages of the disease, the fact that the person follows their caregiver like a shadow can be reassuring to both. At other stages, this can become a nuisance for the caregiver. In any case, it is advisable to remain calm. The person finds themselves frightened in a world that is becoming less and less familiar, so it is only natural that they will try to hold on to the remaining “anchor” figures in the changing reality of their life.
Accusations
People with dementia sometimes pay more attention to the tone of things than to the content. It is important to try to see what is causing the accusations, this is sometimes due to the person feeling that they have lost control (over the house, over money). Sometimes the attitude of the main caregivers is perceived as patronizing and condescending and thus provokes resistance.
The expressions can hurt and anger, especially when they are directed at people who sacrifice significant parts of their lives to care for the patient. It is legitimate to feel hurt, but it is always worth remembering: it is not the patient who is speaking, but the disease that is speaking from his throat. The confusion, difficulty in orientation, and anxiety in which the patient finds himself, sometimes combine with a common paranoid state, which will appear during the course of the illness, and lead to blaming the people closest to him, who in the patient's eyes turn from caregivers to aggressors. It helps to try and understand the patient's intention even if the way he expresses himself is hurtful. A statement like: "You are imprisoning me," can actually mean: "I can't find my way." A statement like: "Why aren't you feeding me"? is a substitute for: "I am hungry." It is not recommended to try and convince the patient of his mistake. These attempts can worsen the restlessness and sometimes even worsen the feeling of persecution. Instead of saying, "No one is trying to poison you," it's better to say, "I know you're scared and frightened." These statements are reassuring to both the therapist and the patient.
If the person accuses the primary caregiver of cheating on them with the foreign worker, it is important for the partner to tell the person that he/she loves them and that they would never cheat on them. If it is a religious family, the partner may say "I swore a vow." The illnesses of the primary caregiver or foreign worker can also be used to convince that there is no possibility/force for cheating.
Accusations about money ("You stole my money"): If the person is in the early stages of dementia, you can sit with them and show them the household bills, go to the bank with them. Try to give them a sense of control over money, give them copies of bank statements and lots of small change so they feel like they have money. If the person is in a more advanced stage of dementia, you can give them "Monopoly" money.
Problems related to using the phone
In the early stages of the disease, a telephone is an important auxiliary device that connects the patient with his environment. As the disease progresses, the device sometimes becomes a nuisance. Alzheimer's patients tend to bother relatives, the treatment team, etc. They tend to call again and again, due to the increasingly severe memory disorder. Patients tend to forget to put the receiver back in its place or forget that the wireless device is turned on. It is not recommended to give the patient a task on the telephone. He may forget, go back and resume the conversation. If the patient lives with his family, he may try to answer all telephone calls, answer inappropriately, forget what he was told, or simply hang up the call. In these situations, you should consider turning off the telephone ringer and allowing the answering machine to answer all calls, or connecting a device that records all calls in their entirety, so that the recordings can be heard later and callers can be answered in a matter-of-fact manner later in the day. It is recommended to transfer calls to your cell phone and inform those who need to be informed of the existence of the device.
Sleep problems
With age, regardless of the presence of Alzheimer's disease, elderly people tend to sleep less in the deep stages of sleep. Sleep becomes easier and early awakenings become more common. In addition, there is a greater tendency to take short naps during the day. In Alzheimer's disease, the problem becomes more complex. Sometimes patients wake up at night to go to the bathroom and cannot find their way back to bed. It is recommended to place a night light next to the bed and a chamber pot, which must be emptied every night. Physical activity improves the quality and duration of sleep, but at the same time, such activity should be avoided in the late afternoon, which can worsen the sleep problem. Many elderly people tend to take short naps during the day. In the case of a patient suffering from dementia, it is advisable to encourage sleep only in the evening. There is a tendency to let the patient sleep during the day in order to allow caregivers hours of rest. It should be remembered that this can take a toll at night. The problem of night wandering is difficult because it can involve falls and injuries. Using various sleeping pills is almost a last resort, as the reaction can be the opposite, to the point of extreme confusion and restlessness or excessive sleepiness. Using physical restraints is the last resort, after consultation with the therapist and a social worker.
Refusal to go to the doctor or have a doctor examine him/her
What is the reason for the resistance? Is the doctor's attitude perceived as condescending or inquisitive? Is the frustration caused by the lack of success in the tests the reason? If so, you can ask the doctor to explain the test and apologize if the questions are embarrassing.
You can explain to a person that they are being tested because of a memory problem and today there are medications that help, so maybe the test at the doctor's is unpleasant, but it's worth it. There are all kinds of things that can cause memory loss. If the person still refuses to try to call a doctor at home and if he refuses a home visit, then you can try to take him to a family doctor who will at least do lab tests.
Refusal to admit a foreign worker
If there is a partner who lives with the person: You can say, "If we bring in a foreign worker, it will make household chores easier for me. It's hard for me to cook and shop. My back hurts."
If he/she lives alone: You can say, "We're worried about you. I can't sleep when you're alone. I've heard of bad things that have happened to people who have been left alone."
When bringing in a foreign worker, it is important to teach him/her that before doing anything, he/she must ask permission, especially with housework. This way, you can prevent the person from feeling like their autonomy is being taken away. It gives the person the feeling that they are not losing control of the home. It is worth trying to bring in a foreign worker from the person's country of origin.
If the objection is because of money: you can say "the insurance helps us pay."
Opposition to an existing foreign worker
It is important to treat complaints about foreign workers with respect. If there are accusations of theft, you can try to check what the person says the employee stole. It is possible that the employee misplaced the things. You can try to look for the things together. It is important to try not to get into an argument with the person. If the person accuses the foreign worker of cheating on him with his wife/husband, it is important that the partner tell the person that he loves him and that he will never cheat on him. If it is a religious family, the partner may say "I swore a vow."
It is worth trying to initially treat the person jointly, the primary caregiver and the foreign worker, so that the primary caregiver can guide the worker.
Refusal to change diapers
If the person is in a less advanced stage of dementia, you can start using pads, then a diaper pant that allows the person to go to the bathroom and roll up the pant and put it back on if they don't get wet. If it's a woman who is embarrassed to use the product, you can tell her that many women suffer from urinary incontinence and use the product. If it's a man, you can tell her that it happens to a lot of people. At first, you can use it only when you go out and then increase the frequency. If the reservation stems from the price, you can tell the person that it doesn't cost money because they get it from National Insurance. It's also important to emphasize that other people don't see the product and to be careful not to put tight pants on the person's body that emphasize the contours of the diaper. It's better not to call the product a "diaper" but an absorbent pad.
In situations of resistance to changing, it is worth trying to change the diaper when the person is more sleepy. It is worth telling him, "Let's change underwear and clothes" and, as mentioned, avoiding using the word diaper. It is important to address the person's frustration at having to use an absorbent product and at the same time explain that due to the situation, it is better to use the product than have embarrassing events occur.
This is not my husband/wife.
If the person is very argumentative - do not enter into conflict with him. Try to distract him. If the person claims that this is not his wife, you can tell him that she is a relative. You can try to have his wife disappear from his sight and come back. It is important that his wife does not get offended by this. It is important to understand that this is part of the disease.
זה לא הבית שלי
You can show a person props/objects and use them to convince them that this is their home. You can take the person for a walk outside and bring them back home. If they are not convinced, you can tell them that "this is not your home, it's the other house. We will be here for a few days. It's temporary right now because the house is being renovated/we are on vacation, etc." In general, you can put a sign with the person's last name and address inside the house.
Refusal to enter the house
You can tell a person, "Let's go inside, I just need to go to the bathroom. Let's sit down and rest a bit. Let's have coffee." If he refuses, you can suggest that he get in the car and take a walk. You can suggest that he take a walk.
Refusal to leave the house
It is important to examine why the person refuses and see if there are places they are willing to go.
Crowded places tend to stress Alzheimer's and dementia patients. You can try to take the person to nature/a park/to their children. You can try to take them outside at other times. You can put on a diaper for going out (sometimes the fear is that there will be an accident in this context). You can tell them, "I won't leave you. Come for me." Try to entice the person to go outside. For example, if the person likes sweets, you can take them to a pastry shop. If they like clothes, you can take them to a clothing store.
Refusal to do activity or get out of bed
Sometimes when a stranger comes to visit, it is easier to get the person going and get them out of bed. It is important to lure them out of bed and not order them to get out. Sometimes the person is depressed and then it is worth trying to help physically: sit them up in bed, open windows. Think about why I am inviting the person, make it worthwhile for them to get out of bed. Play pleasant music to create an atmosphere that intrigues them to get out, for example, warm a cake in the oven so that the smell will encourage them to get out of bed.
In conclusion
The article lists common behavioral disorders among Alzheimer's patients. Some respond to drug treatment at certain stages of the disease, but most often require patience and creativity on the part of caregivers to find ways to cope with the patient and his behavior.
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