Homecare for a person with Alzheimer's "I measure success by how high you bounce back when you hit rock bottom." (George S. Patton)

Chapters of the article

INTRODUCTION

In the post, we focus on the specific manifestations of Alzheimer's and the problems that family members encounter on a daily basis. We offer two case studies where we clearly see the difficulty in home care for Alzheimer's patients. Advice in specific situations is beneficial for everyone who has any contact with such patients.

Quotations from female participants were highlighted in italics and put in quotation marks. Three dots at the beginning of the sentence indicate that the quotation begins in the middle of the sentence, three dots at the end of the sentence mean that the sentence has continued. For a better overview, at the end of each quote, we have included the code of the participant under which it is indicated in parentheses. The abbreviation "O" refers to a family member who cares for a parent with Alzheimer's (caregiver). The number before the abbreviation "O" indicates the order of the interview, and the number after the abbreviation "O" indicates the page of the corresponding interview from which the excerpt is quoted. For example, code (1O2) indicates interview with caregiver no. 1 and the quotation is from page 2. The quoted text is transcribed exactly as it was captured on the dictaphone, it has not been edited.

1 ALZHEIMER'S DISEASE

Alzheimer's disease is a serious disease that causes loss of self-sufficiency with all the social consequences. It is the most common form of dementia.

Manifestations of Alzheimer's disease: • memory disorder, • gradual loss of mechanical skills, • loss of orientation, • communication problems, • personality change, • loss of independence (Hauke 2017, p. 48).

Anyone who comes into contact with a person with this diagnosis on a daily basis sees concrete manifestations of the disease. Family members give us their experience: "Nowadays, when there is uneven aging, which means that sometimes the head and the body aged evenly. Grandma used to sit on the bench and talk, or dig with a hoe in the garden and puck, she fell and died. Not now, because the body is perfectly nourished: quality food, warmth, care, hygiene, just everything. And the body is in perfect condition. But the brain does not defend itself, it goes and goes, down. The body of such a person is in good condition, sometimes even better than those who jump around him - with Alzheimer's. But the brain is out." (2O1)

The disease does not appear suddenly, but develops gradually, first unnoticed, then at a different pace. Family members need to create conditions for fulfilling physical, psychological and spiritual needs and enable the sick parent to remain active - despite dementia (Konig - Zemlin 2017, 16). Our participant confirms the course of the disease: "It always goes like this: it goes on, it falls and it goes again. But the condition always gets worse and then it persists in that worsened state. And then it falls again after a certain time and it persists again. So it's not such a sinusoidal state, but it always persists and it drops again. The stages, the terms between those declines are different. Sometimes it lasts a year, two, and sometimes it worsens in a month or two." (2O1)

Family members who take care of their parents testify that the patient himself panics because he forgets: "In the beginning, he starts to have a problem with it, he starts to panic about himself. He realizes that he doesn't know where he put what, he doesn't know who it is, he doesn't know what happened... it's a shock. Even I sometimes can't remember an expression, something. Yesterday I was on the phone because I was dealing with computer science and I didn't remember one expression, I was nervous about it, and that's how nervous people must be when they can't remember the banality. Then comes the time when they don't notice anymore and then it doesn't really make sense to want anything with them. The drugs are there, it slows it down..." (1O4)

2 FAMILY AND CARE OF THE SICK

Caring for patients with Alzheimer's disease significantly affects the lives of family members and their relationships. After the outbreak of the disease, immediate care is usually provided by the family, which is not prepared for the long-term burden associated with this disease. However, we need to recognize that care in a home environment, where there is understanding and safety, helps to ease the adverse condition of the patient. The family therefore occupies an irreplaceable place in the care of a person with Alzheimer's disease (Magurová 2013, 149). At the beginning, the patient does not realize that it is necessary to address his health condition and postpones or refuses to see a doctor: "He didn't realize it, I noticed it, it wasn't dealt with, he didn't want to go to the doctor, he doesn't have time, he needs to garden... Then there was an ugly problem, and I took advantage of that by saying ...we are going to the doctor. So he got scared, we went to the doctor, it was officially put on paper there. The checks started, I started took him for check-ups..." (1O5)

Although many parents with Alzheimer's disease have multiple children, experience shows that usually only one child cares for the parents. "I was on my own for everything, I took care of my mother alone, I took care of my father alone, I took care of my daughters alone." (1O4) Children of sick parents have various "excuses why they can't take care of their parents: "He needs to work, go to work, he has his things. And you know the relationship between child and parent wasn't built like that..." (1O4)

From practice, we see that there are families where members can take care of the sick, but also families where there is no one who is able and willing to take care of them. "...we also wanted to, we knew how to sacrifice ourselves. Two siblings, we shared and wanted to take care and take care." (2O1) Not everyone can take care of a person with dementia, despite the fact that they have a built-up relationship with the sick parent. "...it can't be compared, it's too lofty that one mom raises 4 kids and 4 kids don't know how to take care of mom. It's such a misplaced equivalence, because wiping 4 pink, round bottoms - that's something completely different than doing this, even if with love, to an adult. Not everyone can do it. Change diapers, wash, lift." (2O1) "... it depends on emotional intelligence, on EQ, on IQ, on some empathy, and not every person is set up in such a way that the caregiving status is built into them." (1O3)

From the testimony of our participants, we can see the psychological burden on the caregiver: "I also sometimes come to the hospital and I don't feel like I'm in a position to be there with someone and deal with something. I'm sometimes glad to leave, I'm ashamed of it. But I'm glad to leave. But the person who's with that person has nowhere to leave, he has to live with him. He can go for a while, but he'll come back and deal with the consequences of something happening. That's why it's good if the other family members don't criticize anything, they try to work a little around with the carer, you can't do anything with the sick person, he needs supervision." (1O3)

The difficulty of caring for a person with Alzheimer's depends on the stage in which it is located. "While he was still walking, it was fine, somehow I knew it, I was running up and down, flying and so on, I tried to somehow engage the children, even when they were small, elementary school, then high school, because it wasn't year two, it was long-term... 10 years. He was immobile for less than 3 years." (1O5)

3 BASIC PRINCIPLES OF COMMUNICATION WITH A PATIENT WITH ALZHEIMER

• We speak in a quiet environment where nothing disturbs us so that he can hear well. • During the conversation, we always look into his eyes. • We use simple, short sentences. • The voice should sound pleasant and calm. • We speak slowly, clearly and reasonably loudly. • We don't shout. • We do not ask multiple questions at once. • We wait until the patient reacts. • We use questions that can be answered yes or no. • We avoid open-ended questions (Klímová- Magurová 2013, 164).

Conflicts in the family

Conflicts are part of our life. A more difficult situation arises when there is a long-term sick member in the family and conflicts increase. In heated situations, the attitudes, values ​​and thinking of all family members will be revealed.

"Then all those relationships will be revealed. And I took one thing from my mother-in-law's whole illness. That what a person does not accumulate, process, solve, accept during his whole life, the state will come, just like her, and then all this will come out of him. Everything, everything will come out. That means, she did not accept me as a bride. Because the first-born son, he married, but stayed at home and took care of her, of the mother. And from this resulted all her attitudes towards me: "You took my son, he could take care of his mother... because of you he left me and now I'm here alone..." and the whole process around that." (2O2)

Among the difficult moments in caregiving are important holidays in the family, when the situation is heightened by stress (christenings, weddings, funerals, anniversaries...) "For example, a moment came, a wedding in the family. You are giving away a daughter, and our grandmother was released from the hospital, a week before the wedding. So I had already arranged for the geriatrics and they were ready to accept her. And on the Tuesday before the wedding, my brother-in-law called us to say that they would not come to the wedding because they had remorse, that the grandmother had been sent home from psychiatry in a stable condition. That they would rather take care of the grandmother. Immediately. I called the specialist and she said that the wedding is a unique affair and that grandma would be better taken care of at the geriatrics. She would also like my brothers-in-law to come to the wedding. I was already afraid that I would lose my husband. We were just sitting opposite each other to the man and he is talking to his sister-in-law. It was the Saturday morning that Grandma got dirty. And he says to her: "Well, we had a more serious problem here, but mom made such a small mess, but we already cleaned it up and put it in order. So I think it's good." When he hung up, I said to him: "What were you talking about? That after... and I cleaned it all, you didn't say a word? That I cleaned it, she washed it... why didn't you say that?" And I'm here after what? I'm just zero here, or what? And he just stood there all that time and watched what was happening here. The two of us had a fight because I was dramatizing it all. Am I dramatizing? But for me alone, it's a drama. So the two of us fought, you could say, for each other. Because he told me that he thought I was doing it all out of Christian love. And thank you for doing this for my mom. And I then, you know: "Damn. You don't think I'm doing this for your mother and my mother-in-law. Because this is what the Lord Jesus taught me and I do it for the love of Jesus. Because if I did it for you or for my mother-in-law, it would end very badly. Because this is my Jesus for me." (2O4)

4 DIFFICULTIES IN CARE

Aggression

Aggression can take the form of verbal (shouting, swearing) and brachial (physical). It is estimated that about 20% of people with dementia who are at home experience aggression. Aggression in clients with dementia differs from that in healthy people. It is usually a reaction to situations that clients do not understand and do not know how to deal with. "...he must not act like a policeman, like a supervisor. He must be a partner for the person to accept him. As soon as the control begins, the conflict begins." (1O1) Aggressiveness is very often a problem of caring people and a reaction to their inappropriately chosen approach and care. The client only defends himself in situations where he is not well and which he does not understand.

"If he feels that someone is making a fool of him, then he becomes aggressive, he hides..." (1O4) The patient defends himself from things he does not want, because he loses the ability to communicate verbally, or because no one understands him. It uses defensive methods on a subconscious basis. "All day, she didn't have one positive reaction to me." (2O4) In any case, the aggressiveness of the client is a huge burden for caregivers (Klímová 2003, 106). "You have to reckon with the fact that you can't expect him to go and do this now or we'll go there in an hour, get ready... You have to navigate him towards what you want to achieve. But not by force, not by orders, because he will start to fight back."(1O2)

Mood swings

The patient often changes moods, and the family member who cares for him is very exhausted from the sudden mood changes. Changes come at any time of the day. "Now she is in the geriatrics, we visited her yesterday too and she was happy that we came. And suddenly: "You don't want me anymore, I want to go home." And she cried. And then we got up... we left... and I listen behind the door, suddenly it's quiet. Because it is not good to whip the situation, if we stayed there, it would be even worse and worse. She would scream at the entire geriatrics. You just get up and leave. Just like when a child sulks at you." (2O3)

Blaming

Despite exemplary care for their parents or in-laws with Alzheimer's, guardians often encounter false accusations from the patient. It is necessary to know that the patient is not distorting the truth, but is really experiencing the situation like this: "...when she felt the excitement, she said: "They already took that from me, everything from my house. They also took these statues, everything was bothering you"...so we quickly took the statues and hid them so they wouldn't irritate her anymore" (2O3).

Escapes

Leaving home, wandering, are very stressful for family members. These departures of the sick are dangerous for several reasons. The patient may not find his way back, but a traffic accident may also occur. "... our mother-in-law is still in a wheelchair, and I will say that this is the best thing about all of this. Because those who are mobile, they run away, let off the gas, etc. Our grandmother is in a wheelchair, but we still had to close the door because she knew how to cross the threshold, she went to the door." (2O1)

Leaving a sick person is dangerous, especially in winter, when the sick person tends to leave only in pajamas and slippers. It is necessary for family members to "expect" departures and supervise the presence of the sick person. “My father had tickets with him – 'to call if necessary'. Because he ran away. I couldn't be with him all the time. I tried but I couldn't. Policemen called me, strangers called me... PHONE, NAME AND IF YOU NEED TO CALL, THANK YOU. I gave them to him there. He had those tickets everywhere in his pockets." (1O4) Experts emphasize that it is possible to trace why a sick person leaves the house, why he wants to be somewhere other than where he is. "... my father ran away, he ran away from everything possible all his life, but then it escalated... he made an electricity bill of 700 euros... because there was an electric water pump, the depth of the well is 30-35 meters there... and he gave water to people. He filled 100-liter buckets, so he gave out hectoliters of water and people abused it...." (1O4)

As a rule, persons requiring care do not run "away", but purposefully run "somewhere". In no case is this an unplanned wandering and certainly not an escape. If the patient wants to leave, he lacks something that the environment does not currently provide him (Konig 2017, 101).

Possible reasons for leaving home or facility (Hauke 2017, 114): • The person does not feel safe. • Sleep disorder. • Feeling alone. • The patient goes home. • Pain. "That person needs 24-hour supervision. He must not be alone. That's why you don't have to put the knives away, but you have to be with that person and watch over him. And you have to watch over him so that he doesn't feel like he's being watched, like some kind of incendiary relationship, you have to always communicate with him, but at the given level." (1O2)

Refusal of food

As a rule, the sick person forgets to eat, or, on the contrary, forgets that he has already eaten, so he eats again. Both extremes must be under control, because a lack of food can lead to malnutrition and an excess to obesity. • Prepare meals that the patient has always liked. • Monitor the amount of fluids you drink, the drinking regime is very important. • Make eating a pleasant affair. • Use containers and cutlery that hold well. • Maintain the temperature of the food and drink served. • Cut food into small pieces. • If he can't eat with cutlery, let him eat with his hands (Hauke ​​2017, 265).

"She didn't want to eat, but he (the expert) said: 'it doesn't matter, she doesn't have the physical activity to endure it. It doesn't matter, let her not eat.' "And that's just one of the forms of showing her egoism. So her way of showing is: not eating, not taking medicine, that's her strong ego, on the other hand, that's what keeps her alive."(2O1)

At first, a person with dementia may have a greater appetite. In the later stages, it tends to be the other way around - a person takes in less food and is unable to evaluate its quantity and composition, and often does not even evaluate whether the food is hot or cold. Difficulty swallowing can be added, which is more common in the later stages of dementia, when food must be fed through a tube. A frequent manifestation of Alzheimer's disease is the progressive development of malnutrition, which leads to: • Decrease in body weight. • Fat loss. • Loss of muscle mass (Hauke ​​2017, 64).

"After that period of defiance, that excitement, the body will get tired and the defiance will drop. That's when I'll come to her and give her something to eat. It's as if the saving of her life will come again." (2O2)

Refusal to drink

When caring for a patient, we need to take into account the habit of fluid intake. In particular, the amount of fluids is individual and we need to take into account that someone who drank only one glass of water cannot force himself to drink a liter and a half of water a day. It is advisable to introduce pleasant rituals around drinking, for example using well-known toasts or favorite drinking glasses (Konig 2008, 26).

Drug refusal

Regular and correct use of prescribed medications is very important, and it is one of the first areas where dementia manifests itself. A person forgets to take medicine at the appointed time, takes the dose repeatedly, or pours the medicine prepared in the dispenser all together (Klímová 2003, 41). "...to give medicine. Because when he said, I'm going to the garden, I packed the medicine for him and said: it's written here, you'll take it at 12:00. I arrived there, the drawer in the kitchen open, all the medicine scattered together on the kitchen counter..."(1O5)

Regular use of medication is a big problem. The participants confirmed this to us in the interview: "... it's much worse if she refuses to take medication. Because she also takes medication for dementia, and when you miss 2-3 doses, it's bad. Here we already had to call the doctor who gave her an injection. They gave her an infusion with glucose and of course that helped, her body regained control. Because she already had water, sugar and we were already fiddling. Well, you can call an ambulance 2x, 3x a month, but then they tell you, so sorry if you can't handle it, please, you have a device there."(2O2)

The caregiver hears the same questions over and over, such as why the patient should take medication... It is exhausting and demanding on the caregiver's patience and psyche: "The medication is taken 3 times a day. And the question is always: "Why should I take medication!?" that's the rejection. And she also shows such sullenness: she doesn't want to take the medicine one at a time and drink each one, but she swallows all 5 medicines at once and it's clear that she's surprised. Then she starts throwing up and you tell her in vain to take it slowly, one at a time. This is it, at least in our case - still like a fight.' (2O2)

It is important to realize that the patient does not have to take the medication himself. You can't even rely on his persuasion, but you have to check the medicines. "You have to dose and control and deal with the medication because he, as a sick person, doesn't feel like a sick person... He doesn't have pain, doesn't suffer and has no limitations, so he doesn't feel sick, he'll tell you why I should take medicine when I'm fine. He'll tell you that you're sick. Always assume that he's lying, as if from our point of view, but he's not lying, he's just so convinced of it." (1O1)

The caregiver needs to choose different ways to give the medicine to the patient. It is important that he receives the medication at the right time and in the right amount. "I sometimes put some medicine in my father's food, or we were having fun and drinks and ... he watched him eat ... and for example I said that this is medicine for blood pressure or for the heart and he took it. So I turned it around 2-3 times and he didn't remember that he had already taken it..." (1O1)

Loss of memory

In patients, the memory disorder manifests itself from the beginning with increasingly frequent forgetfulness. Therefore, family members may not notice that this is no longer an ordinary forgetfulness due to a large number of responsibilities, but a serious diagnosis. They begin to pay attention to these manifestations only when the forgetfulness manifests itself conspicuously in ordinary daily activities, such as turning off the stove, running water, etc. (Hauke ​​2017,49).

In Alzheimer's disease, the first short-term memory goes away, later also older memories and finally even the oldest ones. It is for this reason that people with Alzheimer's disease do not remember what they ate for breakfast an hour ago (or if they ate at all?), but they clearly remember their childhood 70 years ago (Perlmutter 2018, 83). ...because you always have to accept long-term and short-term memory. My father used to talk to you about WWII and how it was before the war, the 50's, how he was in the war... at the worst stage he didn't know me at all, etc. You still have to accept some role that he puts you in if you want to communicate with him. So on what he's on right now, what he's experiencing, what he knows. If he has a long-term memory, then it is necessary to communicate at that level in the long-term memory." (1O2)

Short-term memory

The patient does not remember the time and therefore keeps asking what time it is. He also doesn't remember where he puts what and it's time for a big search. In some situations, he accuses the caregiver of stealing things from him. Family members who do not have the rest of the information about this disease are annoyed that the patient keeps asking the same things (Hauke ​​2017,50). "She had no concept of time, she didn't know what month it was, or how old she was. But when I told her that her granddaughter would have a wedding (date), she knew exactly: "It's on St. Mary's Day, after all." I still had to use her dictionary, she understood everything then. And he keeps asking the same things over and over: "How many children did I have?" and she asked the same thing 10 times and I answered her the same thing 10 times." (2O3)

For a person who cannot remember the past or imagine the future, the world can become alien and hostile (Callone 2008, 28). "I told my father that we should be at the doctor's at 7:30, for a check-up, because he is waiting for us - so I made an appointment. He was already sitting on a chair at 5:00 in the morning, dressed. Because he is lost in time, he sat and was content. Time passes differently for him. I bought him a newspaper every day, and once I bought him an old newspaper, I don't know what happened. But he read it as if it were new. Or in the morning I read it to him he bought a newspaper, he went to church for lunch, he bought the same newspaper as I did in the morning and he read it like new (1O5).

Long-term memory

As dementia progresses, long-term memory also gradually begins to disappear. From the present (time-closest data) to the most distant memories. Situations when the patient experienced very strong emotional experiences (for example, the death of a beloved daughter) can be kept in memory longer (Hauke 2017,51). ... my father forgot that he had children. He only remembered his brother. I played the role of a brother when I came to see him. He didn't know who I was, I was a stranger to him. Or he considered me a brother. When I told him I was his son, he didn't recognize me. It was better for me to play the brother." (1O5)

It is very exhausting for family members to watch a parent they love fade away before their eyes and become unrecognizable. "...he will say every 5 minutes that he needs to go to the neurologist for a check-up: "Let's go and let's go and let's go...". Or he keeps asking: "And who are you?" And you just have to accept those expressions, because you don't know how to solve them." (1O5)

The "Why" Question?

Family members often ask the patient: "Why did you do this??" They see that the patient often does senseless things and they do not understand him. "...when a person does something, never ask him why. Go from that..., because he won't understand what you really want anyway... Because he takes it for granted." (1O1) Here it is very important that family members are informed about the manifestations of the disease. "You mustn't ask the question why and you mustn't wonder..., those are the basic things." (1O4)

5 EXHAUSTION IN CARE OF THE SICK

When caring for a sick family member with Alzheimer's disease, exhaustion, mood swings, sleep and concentration disorders occur, even on the part of the family member. "...we, physically healthy people, couldn't deal with her" (2O1)

The mental burden of the caregiver can be summarized in the following areas: • Unreasonable tasks. • Problematic situations. • Conflicts. • Frustration. • Deprivation (Klímová- Magurová 2013, 94).

"I, as her caregiver, could not afford such things as: "that baby, let's wait, because if you don't want that..." I went to bathe her when I had the strength and space. But she told me that she will take a bath on Sunday. But I could not adapt to her rituals, which she had herself, in her village house. I couldn't adapt to her world, but we go to work and have our children and grandchildren..." (2O3)

Overlooking the signs of overload and exhaustion can lead to burnout or frustration directed at the person being cared for. "When I couldn't handle it anymore, I left and my husband went to her. I had to leave once too, she was in such a difficult condition, we repeated her ritual things over and over again. But she was already shouting at me." (2O3)

It is necessary for the caregiver to be able to determine his own limits, the boundaries where caring for the patient is already beyond his strength. It is necessary to agree with other family members how they will deal with the situation in the future (Hauke ​​2017, 251). "In response to this situation, a priest told me: "Take it like a professional caregiver. Do it for Jesus..." But I said to myself at the time, I know what I'm good at and this is my limit. Because I can't do it. I myself was horrified, where is my limit. Because until then I had a mouth full of holy words. But I can't do it, I can't control it anymore, I don't want to - it's over." (2O4)

Each of us has different abilities, limits and resistance to stress. "Her daughter, she couldn't handle it mentally. Because her family was quite out of it, but they also have 4 children... she went to work... tired, just to cook... And the mother-in-law was not in a mortal condition that she needed to be given... insulin. Still just being the center of attention. So that's also why she had to come to us after that." (2O2)

Caregiver burnout is related to a number of circumstances: "We could never leave her alone." (2O2) "You keep repeating, the same answer, with the same vocabulary - just like the first time. And this is already very exhausting and that's why I say, there must be professional support from a psychologist, because you won't be able to do it." (2O3)

The patient concentrates all his time on himself, and the caregiver's care for his own family is all the more demanding: "...be careful, because your life is running. You have 5 grandchildren and you want to do something for them, and she: "I'm in the way, I won't be here, let me go." In other words, just drawing attention to yourself, in such a sullen way." (2O2)

The caregiver is under a psychological burden every day, and such a burden is destructive even for him. "When she started yelling at me, when she started hitting me, when it escalated, I said to myself and enough is enough. I said to myself, this is my line and I'm not going beyond that line." (2O4) It happens that the patient chooses whom he wants to care for. However, this causes many difficulties. "However, there can only be people around that person whom the sick person accepts. Because a son is a son.... And she kept shouting at him: "Vila, dze ši?" and I when I appeared: "Mom, do you need anything?" And she said no, she doesn't want me. I was the one who washed her, fed her, gave her medicine, and Vilo was there to hold her hand." (2O2)

The caregiver often encounters the patient's ingratitude. Despite the quality care, willingness and love he shows to the patient, he may encounter ingratitude. It is necessary to realize that this is a manifestation of a sick person. "But I have such a principle that when I put her to bed for the night, I put a cross on her forehead. That was a strong motive for me, such an impulse to bless her. And she looked at me like that and said: "thank you for everything you did for me today." She only thanked me then, like in the evening. What I mean by that is that God's works there. And it meant so much to me that whether I did good or bad during the whole day - but I bless you baby. But when it got bad, she didn't even want a cross for me to put on her forehead." (2O4)

Necessity of rest, change of environment, relaxation

Every caregiver needs to set boundaries. A healthy lifestyle is important, but it is very difficult to maintain and protect when caring for a person with Alzheimer's. "I only took the rosary and went straight to the river. I simply had to leave, to save myself." (2O3)

You have to consciously pay attention to healthy eating, enough exercise, relaxation and education. How to solve it if a person has his own family, work, problems with his health? "When you're alone, you don't have time, you don't have money, you have a problem - you don't have time for other things. You have nowhere to regenerate your head. When a person is used to his financial income and then living on a care allowance, it's quite a problem. Because you have, I don't know, 1/5 of your income, and that's really not possible." (1O6)

Psychologists draw attention to the importance of free time, interests, sports and friends for a sick person's guardian (Hauke 2017 230). "...I had to go to confession, change my appearance... start exercising." (2O4)

Remorse for not being able to take care of the sick

Anyone who cares for a parent with Alzheimer's for a long time has the experience that in the last stages of the disease, they are no longer able to provide the care and supervision that is necessary. Many struggle with remorse that they can no longer manage this in addition to their work and taking care of their family. Their relationship with the patient is burdened by these regrets and robs them of the strength to move on (Wehner – Swinghammer 2013, 25). They are frustrated, exhausted, quarrels often arise in the family due to different opinions on further functioning. "When my husband said it was time to find a professional facility, my sister-in-law said no, because she felt guilty." (2O3)

In the last stages of the disease, a situation arises when it is often necessary to place the patient in a residential facility. This situation is a caregiver of a family member - also a big stressor. He feels that he has failed because he could not take care of his family member until the end of his life in the home environment (Hauke ​​2017, 251).

6 HOW TO KEEP YOURSELF WITH BEHAVIORAL CHANGES

The patient is aggressive or irritable • Do not lose patience. • Do not show fear. • Keep him busy with manual work. • Do not scold the patient. • If attacks of aggression occur frequently, it is necessary to see a doctor • To try to reveal what changes in habits or lifestyle have occurred • Give the patient more space

The patient has a depressed mood and complains about his health • They are usually undefined difficulties - dizziness, confusion • If depression reaches such a degree that it affects the patient's life, it is necessary to see a doctor • If it is possible to get the mood to improve, then together you can plan appropriate procedures for coping with the more advanced stage

The patient is apathetic, anxious • Above all, he needs to be calmed down, because he confuses thoughts from the past with the present, he worries • Things he was responsible for long ago • It is not appropriate to convince the patient that it is all imagination • We need to tell him sympathetically that we understand his feelings • Make the patient feel more love and support

The patient is hallucinating • Do not doubt the truth of his claims. • Do not raise your voice, but calm it down. • To divert his attention from the given problem to think about something else. • Do not lose patience (Klímová- Magurová 2013, 156)

CONCLUSION

Every illness is a burden. None are welcome. In the case of Alzheimer's disease, however, a greater burden, or suffering, rests on the shoulders of caregivers - family members of the patient. While in most diseases the patient also suffers from physical pain and is aware of it, Alzheimer's is specific in that the patient does not actually know about his disease (especially in advanced stages). Caring for such a patient is all the more difficult. It is very important for guardians to be informed about how to approach the patient so that the disease process does not progress quickly and that the patient can live in an environment of understanding and acceptance despite the disease. Author: PaedDr. Mgr. Soňa Vancáková, PhD. OZ Maják nadeje, Košice

LIST OF LITERATURE

HAUKE, M. When dementia enters life. Tábor: Association of Social Services Providers in the Czech Republic, 2017. p. 314. ISBN 978-80-906320-7-3. KLÍMOVÁ, E. – MAGUROVÁ, D. Theory and practice in the care of patients with Alzheimer's disease. Prešov: University of Prešov, 2013. p. 233. ISBN 978-80-555-0936-5. KONIG, J. – ZEMLIN, C. 100 mistakes in the care of people with dementia. Prague: Portal 2017. p.119. ISBN 978-80-262-1184-6. PERLMUTTER, D. Don't get Alzheimer's. The first program to prevent and reverse cognitive decline. TATRAN 2018. p. 282. ISBN 978-80-222-0923-6. WEHNER, L. – SWINGHAMMER, Y. Sensory activation in the care of seniors and clients with dementia. Prague: Grada Publishing, a.s., 2013. p. 144. ISBN 978-80-247-4423-0.