Psychological distress related to giving care to dementia patients

Психологический стресс связанный с оказанием помощи больным деменцией
Telzhan V.
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Telzhan V. Psychological distress related to giving care to dementia patients // Universum: медицина и фармакология : электрон. научн. журн. 2021. 6(78). URL: https://7universum.com/ru/med/archive/item/11847 (дата обращения: 22.09.2021).
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DOI - 10.32743/UniMed.2021.78.6.11847

 

ABSTRACT

In the modern world, dementia is a common disease and relevant to research. Of course, most of the research is aimed at studying the disease itself, methods of treatment, prevention, etc. However, an important aspect is the study of the psychological, emotional and economic situation of a person who is caring about a patient with dementia. In most cases, family or relatives take care of the patient and it is uncommon for a family to experience psychological burnout. This article examines in what cases a person experiences psychological stress while caring for a patient. The author also considers how to prevent the psychological burnout of the family, relatives of the patient. Moreover, professional staff caring for the patient can also experience psychological stress. The author of the article also considered this issue.

АННОТАЦИЯ

В современном мире деменция является распространенным заболеванием и актуальным для изучения. Разумеется, большинство исследований направленны на изучение самого заболевания, способы лечения, профилактики и т.д. Однако не мало важным аспектом является изучение психологического, эмоционального и экономического положения человека, который ухаживает за больным деменцией. В большинстве семья или родственники ухаживают за больными и не редко известны случай психологического выгорания семьи. В данной статье рассматривается в каких случаях возникает у человека психологический стресс, во время ухода за больным. Также автор рассматривает каким образом можно предотвратить психологическое выгорание семьи, родственников, близких больного. Более того психологический стресс может возникать также и у профессиональных сотрудников, которые ухаживают за больным. Данный вопрос также был рассмотрен автором статьи. 

 

Keywords: dementia, psychological stress, psychological support.

Ключевые слова: деменция, стресс, психологическая поддержка.

 

Introduction

Dementia is a syndrome, usually chronic or progressive, in which there is a degradation of cognitive function (that is, the ability to think) to a greater extent than is expected with normal aging. There is a degradation of memory, thinking, understanding, speech and the ability to navigate, count, cognize and reason. Dementia does not affect consciousness. Impairment of cognitive function is often accompanied by deterioration in control over the emotional state as well as degradation of social behavior or motivation. Various illnesses and injuries lead to the development of dementia, which primarily or secondarily cause brain damage, such as Alzheimer's disease or stroke. Dementia is one of the leading causes of disability and addiction among older people worldwide. It can have a profound impact not only on those affected, but also on their families and caregivers. There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care. The impact of dementia on carers, the family and society as a whole can be physical, psychological, social and economic [1].

The object of the research is people caring for dementia patients. These include family members, close relatives, friends, workers of a specialized establishment and professional caregivers.

The subject of the research is the process of psychological burnout and emotional fatigue of people who caring about patients with dementia.

The aim of the research is to provide an overview analysis examining the characteristics of psychological support for people caring for dementia patients. Most often, the caregivers are family members, close friends, or healthcare professionals.

The research method consists in an overview analysis of scientific articles, as well as in the analysis of statistical indicators associated with diseases of dementia. The study is descriptive and based on previously published work. The research focuses primarily on the context of providing psychological care to people caring for dementia patients.

The problem of the research is that most of the research is aimed at studying methods of detection, methods of treatment and prevention of disease. However, little research looks at the psychological burnout of people who caring about people with dementia. In this regard, this article can fill the literature on this topic.

Relatives caring for people with dementia often face difficulties. Caring for a dementia patient means constant observation not of progress, but of regression, the loss of some skills, which will now fall on the shoulders of the caregiver with new worries. According to statistics, more than half of the families on the mission of caring for an old sick person are angry with him. With educated moral people, this does not manifest itself clearly, but how difficult it is to continue to love a person whose personality is falling apart before your eyes, and this complicates the life of the whole family. Such long-suffering often leads to emotional burnout: irritability, breakdowns, and then to psychosomatic diseases: arterial hypertension, coronary heart disease, obesity, etc. In addition, for someone else, and “excruciatingly painful for the aimlessly spent years”: life passes by, time and energy is absorbed by caring for a sick person. The severity of the load increases, reaching a climax towards the end of the life of an old sick person. The daughter usually gets the most. According to statistics it is the daughters who take care of any of their parents. Moreover, this is real emotional burnout, so both the aging parent and the one who is caring need psychological support, and often-psychopharmacological help.

There are two basic concepts of burnout and burden. People caring for a sick person may experience both psychological burnout and may experience a burden. J.Y. Ekberg considered burnout. He notes that the phenomena of burnout are detected not only in the field of professional activity, but also manifestations similar to those of burnout in caregivers, especially in family members, have been found [2], [3].

M. Treudley considered the term "family burden". According to the author, this term means a complex of negative consequences associated with caring for a mentally ill family member. The components of the burden are negative emotional experiences of a relative associated with the illness of a loved one. Irritation, anger, depressive and anxious experiences, the perception of a loved one's illness and his behavior as obstacles in life, accompanied by feelings of guilt and shame, emotional stress or even exhaustion, characterize the expressed emotional distress in the patient's relatives [3], [4].

According to the research of V. Zakarov, E. Cherenkova and E.B. Gayvoronskaya. The social, economic and emotional problems associated with dementia place a heavy burden on both patients and their families and society. The fact of a mental illness, especially a serious one that leads to disability, which is dementia, radically changes the quality of life of the patient, as well as his relatives. In addition to the main manifestations of the disease in patients with dementia, a sensitive type of attitude towards the disease prevails, referring to a block of types of reaction to the disease, which significantly disrupts social adaptation, which means that relatives may have additional difficulties in caring for such patients. It was found that the distress that occurs in relatives caring for patients with dementia, in most cases, is associated with the burden of daily care of the patient. The extreme manifestation of distress in relatives is the emerging thoughts of euthanasia during long-term care [5], [6].

In a study by Gayvoronskaya E.B., Shiriaev O. Yu., Kistenev S.V., Cherenkova E.V. it is noted that the social and psychological problems faced by the relatives of patients with dementia experienced great difficulties in the sphere of relationships with the patient in the social sphere. The authors note that there is a lack of information about the features of psychiatric care, proper care for a relative suffering from dementia, as well as about the features of the process of incapacitation [7].

According to the authors, in order to resolve the distress arising in relatives associated with long-term care of the patient, as well as with the violation of the previous emotional and intellectual contact with his sick relative, can be overcome sequentially by providing the necessary information on all issues related to this disease. Also the clear work of all services and continuity in their work. Thanks to all these factors, the necessary level of support for relatives of patients with dementia is achieved, which, of course, has a positive effect on the quality of life of both patients and their relatives.

Petra Borsje, Marleen Hems and others authors, noted that 23.1% of people who giving caring to dementia patients had a high risk of depression and 41.0% had mental problems at the initial stage. The authors found a stable pattern of psychological stress over time. General practitioners should focus not only on the patient with dementia, but also on the psychological stress of caregivers and be aware of their risk of depression and mental health problems, especially for those who are spouses, women, or 50 to 70 years of age [8].

Huali Wang in his presentation also talks about helping people with dementia during the epidemic outbreak of coronavirus infection COVID-19 and how it all affects caregivers. According to Huali Wang, caregivers can be divided into three categories: family members, special care workers, and home care professionals. Huali Wang notes that the impact on caregivers was slightly different during the coronavirus period (see table 1) [9].

Table 1.

Psychological impact on people caring for people with dementia during the COVID - 19 pandemic

Caregiver category

The types of impact

1

Family, relatives, close friends

  • anxiety, concern;
  • excitement, feelings of anger;
  • concern about the health of the patient with dementia;
  • conflicts with the patient;
  • feelings of guilt, feelings of helplessness.
  • psychological burnout.

2

Care workers

  • anxiety;
  • absent-mindedness;
  • panic;
  • irritability.

3

Home help professionals. In some cases, may be medical professionals

  • fatigue;
  • psychological burnout;
  • patient concern.

        

When talking about solutions to these problems, it is important that people who provide care should receive complete information about the disease and the characteristics of caring for patients with dementia. It is also important that the person knows that he can receive psychological and advisory support from professionals. It is important that family members receive official information and should know that they can seek professional help. If the family provides the care, then they should share the care of the sick to reduce the risks of psychological burnout. Family members caring for a person with dementia should receive psychological support, especially if the disease is severe. If we talk about professional workers, then they are taught methods of relaxation and meditation so that there is no psychological burnout.  

Conclusion

In the conclusion, we can say that the psychological problems faced by the relatives of patients with dementia have been identified. The relatives experienced the greatest difficulties in the sphere of relations with the patient and in the social sphere. Were dissatisfied with the difficulties in obtaining social services and their quality. A lack of information was found about the specifics of psychiatric care, proper care for a relative suffering from dementia and about the specifics of the process of incapacitation. All this contributed to the fact that many family members caring for the sick, psychologically burned out. In this regard, in the article, we indicated that family members should support each other and share the responsibilities of caring when caring for the patient. Also family members should have access to a psychologist, if necessary. Moreover, it is important to convey to relatives full information on care and even conduct educational trainings if necessary. In the event of psychological burnout, professional caregivers are trained in various meditation and relaxation techniques to avoid psychological fatigue. As a result, we can say that every year the number of patients with dementia is growing all over the world and caring for the patient in many cases becomes the responsibility of the family. Therefore, it is important to take into account the involvement of the family in the treatment of the patient.

 

Reference:

  1. Dasko T.P., Ivanova O.P. Help for patients with Alzheimer's disease and their families. Journal Medical Nurse, 2000, no. 2, pp. 2-3.
  2. Ekberg J.Y., Griffith N., Foxall M.J. Spouse burnout syndrome. Journal of Advanced Nursing, 1986. Vol. 11 (2), pp. 161—165. DOI:10.1111/j.1365-2648.1986. tb01234.
  3. Bocharov V.V., Shishkova A.M. The Burnout of Informal Caregivers: Contemporary Perceptions and Research Perspectives. Konsul'tativnaya psikhologiya i psikhoterapiya = Counseling Psychology and Psychotherapy, 2021. Vol. 29, no. 1, pp. 149—164. DOI: https://doi.org/10.17759/ cpp.2021290109
  4. Treudley M.B. Mental illness and family routines // Mental Hygiene. 1946. Vol. 15. P. 407—418.
  5. Zakharov V.V. Demencii v pozhilom vozraste [Dementias in the elderly age]. Nerv‐ niye bolezni [Nervous Diseases], 2005, no. 3, pp. 12–17.
  6. Cherenkova E.V, Gayvoronskaya E.B. et. all. Internal picture of disease in patients with the light and moderate degree of mixed type dementia. Urgent Issues of Psychiatry, Narcology and Medical Psychlogy: collected scient. proceedings. Voronezh, 2015, pp. 183–187.
  7. Gayvoronskaya E.B., Shiriaev O.Yu., Kistenev S.V., Cherenkova E.V. Social and psychological problems of the dementia patients’ relatives. The Bulletin of Chuvash Psy‐ chiatry and Psychology, 2016, vol. 12, no. 2, pp. 13–26.
  8. Petra Borsje, Marleen Hems, Peter Lucassen, Hans Bor, Raymond Koopmans, Anne Margriet Pot, Psychological distress in informal caregivers of patients with dementia in primary care: course and determinants, Family Practice, - 2016, vol. 33 (4), pp. 374–381, https://doi.org/10.1093/fampra/cmw009
  9. Huali Wang. Helping people with dementia during the outbreak of coronavirus infection COVID-19. Available at https://psychiatr.ru/news/1098 (date accessed: April 1, 2020)
Информация об авторах

PhD candidate, specialty - "Clinical Psychology" Selinus University of Science and Literature, Italy, Rome

докторант, специальность “Клиническая психология”, Селинусский университет науки и литературы, Италия, г. Рим

Журнал зарегистрирован Федеральной службой по надзору в сфере связи, информационных технологий и массовых коммуникаций (Роскомнадзор), регистрационный номер ЭЛ №ФС77–64808 от 02.02.2016
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Главный редактор - Конорев Марат Русланович.
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