Determinants characterizing the life of a caregiver caring for an individual with Alzheimer’s disease Global population aging is one of the defining processes of the twenty-first century, and this demographic trend has profound economic, political and social consequences. It is estimated that by 2030 one quarter of the population in the economically developed world will be over 65 years old and almost half in Western Europe will be over 50 years old [1]. The world population is therefore aging, and while the majority of older people live independently, a substantial share develops some form of dementia [2]. Currently, 48.8 million people worldwide live with dementia, and by 2050 it is estimated that the number of people suffering from dementia will rise to 131.5 million [3].
Care for people with dementia should therefore be a national priority not only of public healthcare but also of social care worldwide [4].
Dementia is a global problem with rising prevalence, and this fact will have a substantial impact on health and, ultimately, social services. The most widespread form of dementia is Alzheimer’s disease. In relation to healthcare, it is important to note that people with dementia of any type—and therefore people with Alzheimer’s disease—are often admitted to healthcare institutions, i.e., environments that may not be appropriate for them because of the specifics of their illness. According to Houghton et al. [5], it is therefore necessary to create suitable environments, improve the standard of care, and also focus on educating those who care for people with dementia.
In addition to Alzheimer’s disease, dementias include vascular dementia, dementia with Lewy bodies, frontotemporal dementia or so-called Pick’s disease, and dementias associated with other conditions. The most common type is, however, Alzheimer’s disease, which represents 50% of all dementias. Alzheimer’s disease is a neurodegenerative, progressive, and irreversible illness [6]. Halová [7] argues that from a biological perspective of Alzheimer’s disease, it is proven that this disease causes direct chemical changes in the brain, with gradual degeneration of entire nerve cells and fibers. According to Hořejší [8], the main sign of the disease is a disorder of higher cortical functions, which is automatically associated with progressive and irreversible deterioration of cognitive abilities, as well as the onset of various emotional disorders, subsequent behavioral disorders and worsening of the ability to perform everyday activities essential to life.
The disease presents individually in each person, with manifestations partly dependent on previous lifestyle and dependent also on the personality type [9]. Kučerová [10] includes among the most frequent symptoms of Alzheimer’s disease memory disorders, confusion and disorientation, as well as speech disorders and difficulties in decision-making.
Over time, Alzheimer’s disease hinders the person in daily activities; confusion and anxiety become pronounced, with more intense experiences of pain and more frequent onset of depression. Distorted perception of reality and the outside world develops, along with paranoia and frequent delusional ideas. In advanced stages, individuals with Alzheimer’s disease do not recognize close people and there is marked impairment in communication with the environment [11]. According to Majlesi and Ekström [12], Alzheimer’s disease is sometimes difficult to distinguish from other types of dementia because many symptoms are the same. Dementia is generally associated with pathological changes in cognitive functions, such as reduced memory capacity, reduced communication abilities, and reduced ability to take initiative as well as plan and carry out tasks.
In recent times, inappropriate sexual behavior (ISBS) has also been associated with general dementia manifestations. These are demanding and stressful dementia expressions that are very burdensome for clients, families, and providers of social and healthcare services. It is true that ISBS has until now attracted only limited clinical and scientific interest, especially compared to other neuropsychiatric symptoms occurring within dementias. Therefore, we present results from research conducted specifically to systematically examine the occurrence and characteristics of ISBS in the population of people with dementia. Among 195 clients (48.7% women), ISBS was found in 35 clients (17.9% of the total sample). A logistic regression model showed that male sex (OR: 5.14, 95% CI: 1.44–18.41) and anxiety symptoms (OR: 4.92; 95% CI: 1.44–16.84) were significantly associated with the presence of ISBS. ISBS thus represents common dementia manifestations [13].
Statistics on the occurrence of Alzheimer’s disease
As for the USA, it is currently estimated that up to 5.2 million Americans suffer from Alzheimer’s disease, and approximately 200 000 thousand people are younger than 65 years. Over the next several decades, an increase of roughly 10 million people with Alzheimer’s disease is expected. By 2050 in the USA, one new case is expected to develop every 33 seconds, and the overall estimated prevalence is at the level of 13.8 million people. Alzheimer’s disease is the sixth leading cause of death in the United States and the fifth leading cause of death among Americans aged 65 and over. Total spending in recent years for long-term health and hospice care for people with dementia, and therefore with Alzheimer’s disease, reached 203 billion USD per year, excluding contributions for unpaid family caregivers [14]. In addition, it is estimated that around 800 000 people with Alzheimer’s disease in the USA live alone, without an identifiable caregiver. These people are then exposed to circumstances that far exceed the risks faced by people with this illness living in families, including inadequate self-care, malnutrition, untreated health complications, falls, wandering from home without supervision, and even accidental deaths [15]. In recent years, for example, deaths from stroke in the USA decreased by 23%, deaths from heart disease decreased by 14% and deaths from cancer by 11%, while deaths from Alzheimer’s disease increased by 71% [16]. Dementia prevalence rises with population aging, and most people with dementia die from acute illnesses and many therefore require hospitalization at the end of life. It should be noted that these clients receive the same aggressive life-prolonging therapies as any other client, and even so, significantly higher mortality still exists [17].
Within Europe, 7.3 million residents suffer from Alzheimer’s disease, and total social and health care costs reach more than 141 billion EUR annually. In this context, it must be noted that there is a direct relationship between dementia severity and increasing care costs for caregivers of people with dementia. The average monthly estimated cost of care for people with dementia in home settings is, for example, 1956.2 EUR in Spain. Higher costs are associated with greater disease severity, increasing dependency in activities of daily living, and comorbidities of the individual [18].
The number of patients in Slovakia is estimated at 50 000 with Alzheimer’s disease. The exact figure is unknown, because until now no adequate epidemiological study has been carried out, but it is assumed that by 2040 the number of individuals affected by this disease will rise to 180 000 [3].
Institutional care versus home care
Care that respects the dignity, needs and identity of a person with Alzheimer’s disease can develop only in an environment of trust and mutual respect [19]. In relation to respect, Pronzanto [20] underlines its importance especially in relation to parents, particularly in their final phase of life. According to Jing et al. [21], identifying factors associated with quality of life in older adults with dementia could contribute to improving the quality of life of this target group.
Mitchell et al. [22] claim that 42% of people with any type of dementia in the United States and nearly 40% in the United Kingdom live in assisted housing in residential care facilities. However, many authors state that institutional care provides very limited social contacts and these individuals experience social isolation.
As for acute hospital beds, up to a quarter of these beds are occupied each year by clients with some type of dementia, yet hospital staff often lack knowledge and skills in relation to clients with dementia, which also does not help to improve the quality of life of this population [23]. Developing relationships of people with dementia with their environment requires specific communication and interpersonal skills from staff, and the lack of educational programs for employees in primary social and health care focused on care for clients with dementia has a negative effect on practice and on shaping attitudes toward an individual with so serious an illness [2,24].
Institutional care, whether in a healthcare facility or in an institution providing social services, has particular shortcomings compared to home care, particularly in the loss of family bonds and other social contacts to which individuals with Alzheimer’s disease are accustomed. Loss of closeness in this context can trigger negative feelings, mixed with fear and often sadness, which may then contribute to worsening condition. For example, Friedmann [25] argues that in institutional care there is also a loss of privacy, because given the limited capacities of social institutions, the required level of privacy cannot be ensured in full [25].
Milte et al. [26] examined the positioning of the individual in institutional care. They conducted research in a residential care home. The study focused on the significance of high-quality institutional care from the perspective of people with changed cognitive abilities and their family members. Qualitative data were collected through in-depth interviews and focus groups. The number of participants with cognitive problems was 15 and family participants numbered 26. For both groups, a positive attitude toward meaningful activities and opportunities that would allow them to feel useful was characteristic. Within institutional care, the model presented by the study participants emphasized the continuous maintenance of contact between a person with dementia and the family.
From these results, we can derive that home care may have advantages over institutional care in maintaining continuous contact between individuals with Alzheimer’s disease and the primary family. Our claim is also supported by Majlesi and Ekström [12], who studied interaction and cooperation between people with dementia and their partners in relation to household tasks. The authors emphasized in interactions the possibility of teaching and guidance specifically in the home environment. People with dementia can be led by their partner into shared activities, and the partner can create a stimulating interaction context; even if the driving force is the partner’s initiative, the person with Alzheimer’s disease can be useful in carrying out daily activities. According to Jarošová [27], it is especially home care that helps the individual achieve physical, mental and ultimately social health and well-being while preserving a certain quality of life. In a similar vein, Risco et al. [28] state that the most appropriate approach in caring for people with dementia is to care for these people through home caregiving and that long-term institutional care is the best option only in cases of greater dependency in activities of daily life.
However, Alzheimer’s disease represents a serious social issue in the context of family care. As the number of people affected by this disease increases, so does the number of family members providing full-time care [6]. In many cases multiple family members care for a person with Alzheimer’s disease, yet care is highly demanding and requires maximum supervision of this person [29].
Care of a person with Alzheimer’s disease places high emotional strain on family members and the family is exposed to many problems that often seem unsolvable. A key factor in successfully managing care is strong family cohesion and appropriate distribution of roles among family members. Such care leads to changes not only in employment, but also in free time, which must be reevaluated or even completely changed [30]. To ensure adequate caregiving, it is therefore important that caregivers communicate effectively with people with dementia, because these individuals have limited communication abilities and thus have difficulties with understanding and expressing words [31].
Methodology and sample characteristics
Alzheimer’s disease therefore affects not only the clients themselves, but also many family caregivers and family members who directly care for people affected by this disease. The very ability to cope can itself be understood as the capacity to deal effectively with stressors to which one is exposed in the given situation. This is not only the ability to manage the situation, but also to overcome it. In 2016, we carried out in Slovakia a qualitative study on a sample of 10 participants, who had been caring for a client with Alzheimer’s disease for more than two years, focused on identifying burden determinants related to caring for people with Alzheimer’s disease.
The goal of our research can be expressed in three interconnected planes that are mutually related and partly overlap:
- Describe the determinants that cause stress among participants, resulting from care for a client with Alzheimer’s disease.
- Identify the main burden areas associated with caring for an individual with Alzheimer’s disease.
- Reveal the emotions related to caring for a family member with Alzheimer’s disease.
The research was conducted using the focus group method and took place in a specialized social counseling office in Krompachy, i.e., outside participants’ natural environment, during three group meetings held in the afternoon over one week. We chose focus groups because this method gives space for deeper discussion and involves a relatively small number of participants, while data quality can be improved through support of mutual interaction among group members.
Before the research began, potential participants were informed about the study aim, given sufficient information about implementation and subsequent publication, which allowed them to consider participation. All participants gave informed consent for processing the research results, and this consent was given freely and without pressure. Participants who joined the research had entered the counseling process within the last two years, which was either completed or ongoing. They contacted the counselor with problems concerning care of a family member with Alzheimer’s disease. This aspect was perceived as a positive factor in conducting the study because participants already had trust in the counselor who then carried out the research, and communication barriers were therefore minimal. This method allowed us to obtain a deeper view of the research issue in a relatively short time, through capturing the full range of opinions within the target group. The results were not numerical data but information that we later grouped and analyzed qualitatively. All group meetings were audio-recorded, then transcribed by verbatim transcription and analyzed through framework analysis. Its first step was working with obtained material and organizing it—that is, sorting and reducing it. The second step was interpretation. This procedure allowed systematic searching and evaluation of the full dataset and clarity of selected methods.
The structure of the study sample can be described as follows:
- P1, age 48 years (has cared for her mother for three years; previously worked as an accountant).
- P2, age 49 years (has cared for her mother for four years; previously worked as a sales assistant).
- P3, age 56 years (original profession: production operator; has cared for her mother for four years).
- P4, age 70 years (retired man caring for his wife for five years).
- P5, age 54 years (has cared for her mother for three years; originally worked as a librarian).
- P6, age 52 years (has cared for her mother for six years; previously worked as a gardener).
- P7, age 58 years (has cared for her father for three years; original profession—kindergarten teacher).
- P8, age 57 years (has cared for her mother for five years; previously worked in agriculture).
- P9, age 55 years (has cared for her mother for three years; previously worked as a tailor).
- P10, age 51 years (has cared for her father for three years; worked as a professional parent in daycare).
Research findings and discussion
The most striking phenomenon causing stress among caregivers is the poor health of the family member, resulting from the mental illness itself. This mainly involves the person’s inability to perceive reality, understand spoken words, and the fact that a person with Alzheimer’s disease often shows signs of irritability. The possibility of leaving the home was a major caregiver stressor and appeared for all caregivers. In Table 1 we describe the basic determinants arising from the poor health status of the client that subsequently cause stress in participants.
Table No. 1 – Determinants that trigger stress in caregivers
The inability to perceive reality and also misunderstanding spoken language are manifestations associated with direct disease progression. Although participants knew the course of the disease, they stated that the family member’s behavior induces stress that they cannot always manage with composure. Irritability appears already in early stages of the disease, and over the following years it can often be reduced by targeted pharmacological treatment. All participants considered the possibility of a person with Alzheimer’s disease running away from home as a serious stressor.
The impact of caring for an individual with Alzheimer’s disease on the caregiver is presented in a paradigmatic model containing four distinct but integrated blocks: emotional burden, physical burden, financial burden, and also the phenomenon of isolation.
Emotional burden Table No. 2 – Emotional burden: manifestations and dimensions
The progressive loss of memory, as well as irritability and changes in temperament, all contribute to increasing problems in the emotional experience of family members caring for a person with Alzheimer’s disease. Subjectively experienced emotional exhaustion was recorded in all participants and ranged from “frequent” to “always present” in dimensional terms. For the emotional dimension, participants were characterized by dejection, helplessness, self-pity, irritability, nervousness and hopelessness, directly related to varying degrees of frustration. It is clear that participants struggle with strong negative feelings, but also sadness, or sometimes nostalgia that they are gradually losing their family member and thus also losing support from someone who meant a lot to them. Seven participants expressed sadness related to the loss of positive memories of the person they care for. During the group meeting, two participants cried when discussing sadness connected to the loss of positive memories of a parent; this issue was very painful for all participants and correlated directly with the duration of the illness in family members. In relation to this finding, we cite several parts of the interviews.
“Mama was an amazing person, caring, hardworking, capable, with broad social insight, and I want to remember her that way, but I catch myself when her current behavior starts to override the person my mother really was... I keep trying to find my mother in my thoughts as she was before this disease, but it is increasingly harder. All positive things seem to be fading away and that really hurts me, and I am sad; she definitely didn’t deserve this...” (P6, age 52 years) “We went to court regarding partial removal of legal capacity for my mother; the judge wanted to hear her, but it was emotionally unbearable for me to listen to what my mother says and see how she behaves, tears came into my eyes. I closed my eyes and tried to remember my mother before the disease, how she could communicate and behave with dignity, but I could no longer form that picture, or I could only form it with great difficulty. Even now it makes me sad...” (P1, age 48 years) “In the first years I coped very well, but in the last two years I am losing my mother, I cannot confide in her, I cannot tell her about my suffering because she just looks at me silently. It seems to me she sleeps even during the day; sometimes I want to literally shake her and say, Mommy, please wake up... I am so sorry that this woman, who could handle everything, who helped us through all our problems and worries and was always our support, is now completely gone. I can sometimes no longer remember her as she was before the illness. She has had Alzheimer’s for twelve years and memories of the years before fade more and more. When I feel worst, I always look into her eyes and try to find my mother there again; she is there somehow, I know it...” (P2, age 49 years).
On the topic of emotional burden in the context of grief, participant P3 (age 56 years) says: “It hurts me that I can no longer confide in her about anything. She looks at me and does not understand anything. I always give up after a while, it makes no sense. Yet sometimes she seems to sense that when I am sad, she is also sad, and that she feels I am having problems. It makes me very unhappy; it is hard to see your beloved parent mentally leave in front of your eyes.”
Caregivers often feel pity that their family member is in severe decline, completely dependent on help from others and no longer recognizes them in the final stage of illness. Overcoming these negative emotions is not completely possible; nevertheless, it is necessary to face them and accept this disease as part of life, even though it is not easy. Caregivers often lose patience and are then surprised by their own unpleasant reactions. Participant P4, 70, has cared for his wife with Alzheimer’s disease for five years:
“If I managed all household tasks, then it was fine, but at the beginning my wife was not as bad as she is today. I admit that sometimes my patience snaps. When I ask her to put on a sweater, she looks at me as if she doesn’t understand what I want. A few times I shouted, then when my wife is sleeping I cry. I never wanted to hurt her...” (P4, 70 years)
When managing emotional problems linked to Alzheimer’s disease, it is necessary to understand the disease mechanism. Individuals with Alzheimer’s disease stop recognizing the meaning of words in late stages. At that moment, they may not realize what a coat, food, television, and so forth are. Although the caregiver repeats the term several times, this is absolutely futile. Understanding this accompanying symptom can help caregivers control their nervousness and negative behavior toward the ill person. In emotional burden, participants described frustration that they are powerless to change the situation; this frustration is often preceded by feelings of anger at themselves or even at the family member with the disease. It is individual adjustment to this reality, associated with helplessness, despair, crying, and anger.
P5 (age 54) had a very good, even friendly relationship with her mother, but when her mother became ill, her reaction was marked by anger toward her mother because of her illness. “My reaction when I learned that my mother had Alzheimer’s disease was accompanied by anger at her. It took almost two years before I ‘forgave’ her. Of course I did not show it, but inside that feeling pursued me. I kept telling myself that my mother couldn’t help it, yet deep inside I literally hated her...” (P5, age 54 years)
Out of ten participants, we identified feelings of anger toward the family member in five participants; the remaining participants directed their anger toward God or fate.
Financial burden
As soon as Alzheimer’s disease is diagnosed in a family member, the family should start discussing quickly how to ensure the best possible care for the close person [9]. Slovak legislation allows a caregiver allowance as a compensatory benefit to a family member who cares for such a person. However, this allowance is very low, and if a family member must resign from employment, the amount of the financial contribution is calculated also taking into account the pension amount of the person to be cared for. The basic amount of financial support is reimbursed monthly at 111,32% of the subsistence minimum for one adult in caring for one person with severe disability (severe health impairment—ŤZP), and 148,42% of the adult subsistence minimum, which in Slovakia for 2017 is set at 198,09 EUR per adult, for caring for two or more persons with ŤZP. If the person providing care for a person with ŤZP receives an old-age pension, early old-age pension, disability pension due to reduced earning capacity of more than 70% (a “full” disability pension), or an early retirement pension/invalidity retirement pension, then income of the cared-for person with ŤZP is not reviewed or considered, and the amount of the monetary care allowance is 46,38% of the adult subsistence minimum for caring for one person with ŤZP and 61,22% for caring for two or more persons with ŤZP. The problem is that caring for an individual with Alzheimer’s disease is tied to round-the-clock care, and if the family decides to use e.g., home care services for four hours daily for relief, the caregiver allowance is then forfeited.
A participant caring for her mother with her husband describes financial burden as follows: “We were faced with a decision: either my husband leaves his job or we place my mother in an institution. Today there is a waiting list for institutional care, and my mother has such a small pension that we would still have to pay extra. In the end, we chose the alternative that my husband will care for my mother and I will help him. Our income has decreased, and my husband has even more work than before...” (P3, age 56 years) In similar terms, P4 says: “At present we cannot afford to place my wife in a social care facility. She has a low pension, she receives 300 euros and I get around 500 euros. If things get really bad, the children will have to take care of it and pay extra for social care, but they also have trouble making ends meet...” (P4, 70 years)
Regarding increased financial burden associated with care for a person with Alzheimer’s disease, it should be noted that placing a family member with this disease in a social care institution in Slovakia is also financially demanding. As of 28 February 2017, the average old-age pension in Slovakia amounted to 425,99 EUR, while placement of a family member in a specialized facility within social services is charged, in many cases, at rates up to 450 to 900 EUR.
Financial burden in caring for people with Alzheimer’s disease is therefore not determined only by increased treatment and medication costs. It is also linked to the limited financial means provided to caregivers in Slovakia, as well as to high amounts required by institutional social-care providers in cases of year-round residency.
Physical burden of family caregivers
Zvěrova [6] reports that caregivers have poorer physical health than people who do not care for anyone. For this reason, they more often visit doctors with chronic symptoms and use many prescribed medications. They report poorer subjective health and higher morbidity and mortality, because the reason is acute lack of time for self-rest, lack of time for leisure activities, and lack of time to care for their own health. To this theme, Tošnerová [32] also refers, describing care of a person with Alzheimer’s disease as increased physical burden and comparing it to physical labor. Caring for the home and household itself—for example laundry, cleaning, shopping, and food preparation—requires energy and can be exhausting, especially when the caregiver must also care for their own household. We include the statements of participant P7 (age 58 years), who cares for her father for three years, and participant P8 (age 57 years), who cares for her mother for five years.
“My father was a hardworking and lively person all his life, liked to go on walks and loved nature. At first I wanted him to live at least a little as he did before illness, so I dressed him each day and we went out for a walk. I can no longer manage now. Father cannot dress himself, I must put on his shoes and clothing, and when we return home repeat the entire process again. It is easier in summer, but in winter? Also, when I want to bathe him, I become completely exhausted. In addition, I cook, clean, and try to ensure the household runs, but it feels as though I am no longer able to manage it physically; I am exhausted, and I sleep poorly because I keep waking to check whether my father has gotten up and is walking around the house.” (P7, age 58 years)
“My physical strength is rapidly decreasing. Although I do not need to lift my mother, she is often too hyperactive, and when I want to cook lunch, do a little cleaning, and at the same time keep following her, I become worn down... The problem is also showering and ensuring basic hygiene needs. Taking care of such a person is hard work, and this work has no time limits. There are days when my mother does not sleep at night and I have to function in the morning as if I had slept, while I did not rest at all at night. My back is giving out, and if I stand for long periods my legs ache; lately I feel as if my right hand is tingling...” (P8, 57 years)
Workload in general should be determined by some balance between a person’s current performance capacity and, on the other side, the requirements arising from the tasks they perform. An optimal state is when both phenomena are in some equilibrium; then we can say the load is appropriate and does not lead to acute exhaustion of the person. However, among all participants we identified overload exceeding limits, arising from excessive exhaustion.
Social isolation and loneliness of caregivers
Social isolation of family members caring for a person with Alzheimer’s disease is directly determined by the fact that this disease requires 24-hour care, which is often the reason caregivers lose contact with the outside world and withdraw into themselves. Isolation is also conditioned by generally common negative myths about Alzheimer’s disease, often proclaimed publicly, while participants link their social isolation to continuing feelings of loneliness. The degree of loneliness is highly individual among participants and comes from subjective experience of real-life conditions arising from uninterrupted care of a person with Alzheimer’s disease. Loneliness was described by participants also as an anxiety feeling accompanied by perceived deficits in social relationships, often appearing together with social isolation. Unlike social isolation, loneliness was more related to perceived quality of social relationships than to their quantity. Loneliness was described more often by participants who did not have a broader social network around them that could provide high-quality social relationships. These were mainly participants who lived alone or whose health limited mobility. With regard to social isolation, this was perceived as a burden by all study participants. Social isolation stemmed from the real situation of direct inability to participate in the life of one’s community due to the time demands of caring for a family member with Alzheimer’s disease.
We include an excerpt from the interview with participant P9 (55 years), who describes her social isolation as follows: “Since I started caring for my mommy, I feel extremely alone. At first my brother came more often, but now he only calls and asks whether I need anything. I do not go anywhere at all, even when I could; mommy gets up at night too and I rarely sleep. Until a year ago I used to take her to visit neighbors or more distant family, but when I see how people look at her I feel sick. They think she is crazy, you know she sometimes repeats the same words over and over... And yet, from her eyes, I can see she is happy when she is among people, but maybe people are not happy when she is among them... When the mail carrier comes, she used to come in for a few minutes, exchange a few words, but now she only hands me the mail at the door and leaves. Alzheimer’s is not contagious and nobody knows how it ends...” A similar statement appears in participant P4’s response (70 years): “Loneliness is my daily lot; I cannot move far from home. My wife is disoriented outside and panics, which can lead to sudden running away, and I am old, I cannot catch up, and I have limited walking. We are in the house all day, with the door closed, and I go nowhere. I only go to the doctor, and even that I must ask our oldest daughter to help with transport. It is not easy. The children visit sometimes, but they have their own lives...”
For caregiving not to become an insurmountable burden and to avoid social isolation that then turns into a loss of social contacts, caregivers of a person with Alzheimer’s disease need adequate support from their surroundings. According to Kebza [33], this adequate support can be provided through social support, which generally includes six main components: family, close friends, neighbors, colleagues, community, and professionals.
Conclusion
Care for an individual with Alzheimer’s disease is immensely stressful and often evokes negative connotations not only in the surrounding society but also in the caregiver.
The most strongly described emotion reported by participants was anger and sadness. This anger stemmed from the real inability to improve the health condition of a close person and from caregivers living in constant fear of possible complications in providing routine care. The loss of a family member in the sense that their mother or father may still be alive but no longer shows previously typical interactions or even no longer recognizes close people is also a common cause of anger. All participants realize that this emotion does not bring positive aspects to caregiving. A significant finding is also anger that participants described in relation to the person they care for. Participants were ashamed of this anger and even felt guilt, yet they described it as part of experiencing and adjusting to the disease of the loved one. A new finding is also grief from the loss of positive memories of the close person described by participants. The loss of these memories is directly proportional to the length of time the family member is in such a state of psychological degradation, where their personality changes—that is, their traits, character and temperament change due to the illness. A person with Alzheimer’s disease therefore demonstrates behavior different from the period before becoming ill. Loss of positive memories causes acute sadness and was identified in most participants. Many cope with this phenomenon on their own, and within the group discussion it was clear that opening this topic was positively experienced by them in terms of emotional processing. We also want to point out that to some extent we can include the economic factor among those determining the caregiver’s psychological state, expressed as reduced family income. A significant finding is also the persistent phenomenon of social isolation and loneliness among caregivers. In relation to loneliness, this is an intense feeling of anxiety resulting from the acute lack of social relationships, based on lived experience and therefore tied to the caregiver’s current situation and role. Of course, the perception of loneliness and social isolation is always subjective, yet this strong subjective perception can lead to mental disorders on the side of the caregiver. If we add increased physical burden of the caregiver, it is clear that caregivers of people with any form of dementia deserve attention from the wider professional public. Given this, it is necessary to ensure the development of specialized services focused on supporting caregivers, as well as raising awareness in wider society about this type of disease. We also want to stress that respite services can play an important role in caregiving for people with Alzheimer’s disease today.
The results of our study clearly indicate that a caregiver of a person with Alzheimer’s disease needs strong social support in their environment; this support may be formal or informal. The help for caregivers to overcome and manage demanding situations can be provided by the previously mentioned respite centers or day centers. Caregivers reported that if these centers are more than twenty km from home, stress increases due to the transport of the client. Participants were more inclined toward using paid home caregiving services, but not all can afford this financially.
In relation to the results presented, we want to direct professionals working in social services to this area. We clearly propose developing self-help groups for caregivers or family members caring for a person with Alzheimer’s disease, especially as a context for experiencing various emotions, which could emerge in these groups. Society must begin public discussion of caregivers’ problems for people with any type of dementia; discussions on this topic should open, and the role of a caregiver for such a person should be valued by society—not only financially. Our attention is due to everyone who has decided to care for their loved one, everyone who faces the day-to-day problems arising from caring for a person with Alzheimer’s disease every morning. Whether we choose self-help groups, respite centers, or even community centers for this target group, we must always think not only about those with this disease, but also about and help those who have taken on the caregiver role.
Author: Mgr. Katarína Kotradyová, PhD.
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