| Abstract |
INTRODUCTION: Dementia is a clinical symptom that is characterized by symptoms like difficulty in memory, speech and other cognitive functions and differences at the behavior having a result in everyday life. Alzheimer’s disease is most common form of dementia which is responsible for the 60-70% of dementia occurrences. With the increase of life expectancy in all the universe the prevalence of dementia has increase dramatically. Particularly, the number of people worldwide that live having dementia is estimated at 55 million of people with over 60% those who live in countries having a low and mediocre income. The care of person with dementia, demands full concentration and commitment by the curator who is usually the wife or husband. During the passing of time, as they grow, the spouses themselves face health issues, and their Children usually start involving in the cure of the suffering member of the family. Moreover, the relationship between the curator and the patient becomes more and more depended as the patient worsens gradually. From the side of the patient, there is the need of long-term cure. The curator, on the other hand, is lead to psychological bodily and financial exhaustion which have negative consequences for the same person and the rest of the family.
PURPOSE: The purpose of this study is to investigate the psychological charge of the informal curator and how this change has an impact in his everyday life and the life of the member of the family who has dementia. The main question, therefore, is: “Which is the grade of psychological charge of informal curators of patients who have mild intellectual disorder and dementia in different types?”. For this purpose, curators from the spectrum of all intellectual disorders will be studied, from the stage of mild intellectual disorder (where there is no need of particular intervention by the curator) till the mediocre and serious dementia.
METHODOLOGY: It waw a concurrent study, which took place at the University of Heraklion Crete. The gathering and recording of data took place for three months, from January till Murch of 2023. The sample of the study was composed by the informal curators of the patients having mild intellectual disorder or dementia. They were formally diagnosed and showed symptoms and were under treatment for dementia and were observed / monitored at the medical offices and clinics of the Neurology and Pathological Clinic of Pagni. The patients with dementia, lived at their houses and not at the specific unit of care. There was the accumulation of the demographic data of the social characteristics and elements having to do with the disease. For the study, two clinical tools/questionnaires were used:
1. The weighted Climax of Burdening (Zarit Burden Scale)
2. The DASS-21 climax.
At the Zarit Burden Scale, for factors that burden the curators are distinguished. Those are the personal tension, the tense of their role, the management of the cure and the deprivation of the role which has been translated into Greek by Papastavrou and co. (2006). It has been asked and given permission for the specific study for the Hellenic publication. It is a climax fore the measurement of depression, anxiety and stress. It has been translated into Greek by Lirakos and co. (2011) and the survey has already been permitted.
RESULTS: At the process of accumulation of the data, 100 informal curators took place. 63% were women and 37% were men. The average age of the curators was 64.4(≠12.0) years old with the width of 35-88 years. 81% of the curators were married. In addition, 63% of the informal curators were graduates of compulsory education and secondary education and 41% was pensioners. The 58% of the informal curators were the children of the patients and the average cure was approximately 4.4(≠3.3) years with the width of 1-15 years. The analysis of the results of the survey showed that having serious or/and very serious levels of stress was found at the 36% of the curators with anxiety 25% and depression 14%. Moreover, with mediocre or serious charge for the health (as it seems from Zarit scale) the 40% was found with mild – mediocre the 23% was found / with minor even with no charge, the 37% of the curators. The survey also showed that women curators seem to show higher levels of depression (rho=0.270, p<0.05), anxiety (rho=0.364, p<0.05), stress (rho=0.458, p=<0.05) but also worsening of their health (rho=0.300), p<0.05) whereas men did. As far as the stages of dementia of the patients of the survey, those curators of the patients who have been diagnosed with serious dementia are ascertained with higher levels than those who have been diagnosed with mild, for the symptoms of depression (18.7 whereas 9.4 p=0.014), anxiety (15.3 whereas 7.3 p=0.011), stress (23.7 whereas 15.9 p=0.005) and health charge (47.7 whereas 29.2 p=0.008). Lastly from the association through multiple accounting retrogression of the mind-mediocre in comparison to the normal levels of the scales Dass-21 (Depression Anxiety and the Stress) and the Heath charge Zarit of the informal curators it was found that for every scale of increase in the education level the odds is significantly reduced for 0.30 for the increased depression symptomatology ( OR: 0,30 P<0.05) whereas it is increased for 7.53 for those curators who have severe – mediocre – mild charge of their health (OR: 7.53, p<0.05). At the anxiety for every increase at the levels of the education, the odds is reduced equally importantly at 0.47 for increased anxiety symptomatology (OR: 0.47, P<0.05) where as it is increased per 1.59 for every accompanying disease (OR : 1,59, p: 0,05) per 2.62 for every stage of the change of dementia (from mild to mediocre and serious) (OR :2,62,p<0.05) or per 4.38 for those curators who have serious – mediocre – mind encumbrance of their health ( OR: 6,49, p<0,05). As far as the charge of the curators is concerned, women curators were found with Significant higher odds per 2.85 for serious – mediocre – mild encumbrance of health (OR : 2,85 , p<0.05).
CONCLUSION: In the present study, it was found that the burden of care is shouldered by the partners of the patients, followed by daughters and daughters-in-law in case of incapacity or loss of the main caregivers. In addition, it was shown that informal caregivers had higher levels of stress compared to depression and anxiety, while their health burden was found at moderate to low levels. Women with a low educational level, as well as elderly women, were particularly burdened, due to their inability to adequately cope with the demands of care in the psychological well-being of caregivers, the stage of dementia to which the patient belongs and the comorbidity play a large role, elements that are directly related to the psychological and health burden of the caregivers. In addition, patients are more stressed when male caregivers are primarily responsible for their care, apparently due to insecurity. At the same time, it was shown that the high educational level was a protective factor for caregivers' anxiety and depression, as well as for their health burden. Optionally, health professionals can actively contribute by providing continuous education, information and psychosocial support to caregivers throughout the end-of-life care of terminally ill patients.
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