Effect of Dementia Educational Program on Formal Caregivers Burden in Elderly Homes

Background: Dementia disease is usually identified among older patients, but it is not a part of the normal aging process. The number of Dementia's patients in the Arab countries is increasing due to increased longevity and improvement in the health care system. This study aimed to assess the effect of an educational program on Formal Caregivers Burden in Elderly Homes. Methodology: This study employed a quasi-experimental one-group pre-test-post-test design. The study was conducted in three elderly nursing private homes in Amman, Jordan using purposive sampling of 50 formal caregivers. Results: Dementia patient’s caregivers’ burden was decreased after program implementation, with statistically significant between prepost, and three months after program implementation (p<.001). Findings demonstrated that the formal Dementia caregiver’s education program can effectively decrease burden among caregivers. Recommendation: Conducting continuing education program for Dementia patient’s caregivers in the nursing homes to promote their practices and decrease their burden.


INTRODUCTION
Dementia is a syndrome in which there is deterioration in cognitive function beyond what might be expected from the usual consequences of biological ageing [1]. Dementia mainly affects older people with 55 million people worldwide are living with it. It is the seventh leading cause of death among older people globally. Dementia has multifactorial impacts not only to people affected by it but also for their carers, families and society at large. Signs and Symptoms of Dementia appeared in three stages: Early stage which may include forgetfulness, losing track of the time and becoming lost in familiar places; Middle stage which include becoming forgetful of recent events and people's names, becoming confused while at home, having increasing difficulty with communication, needing help with personal care, experiencing behaviour changes, including wandering and repeated questioning; and the Late stage is one of near total dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious and may include becoming unaware of the time and place, having difficulty recognizing relatives and friends, having an increasing need for assisted self-care, having difficulty walking and experiencing behaviour changes that may escalate and include aggression [1].
Dementia disease is usually identified in older patients, but it is not a part of the normal aging process. Memory problems are the first signs of cognitive impairment related to Dementia; the first symptoms of Dementia vary from patient to patient. For many, deterioration in non-memory aspects of cognition, such as word-finding and impaired reasoning or judgment, may indicate the very early stages of Dementia disease [2]. Hence, the progression of Dementia can be very stressful for patients & caregivers. Caregivers may feel hopelessness when the patient's behavior changes or the patient no longer recognizes close family members [3]. Caring of Dementia patients has unique challenges; patients in the middle and last stages of the disease develop losses in judgment, orientation, and the ability to communicate and understand as well as the personality and behavior of patients are affected. Burden is the reaction resulting from an imbalance of acre demands relative to the degree of dependence on caregivers, career development, emotional health, physical health and social relationships. Formal & informal caregivers must help Dementia patients to manage these changes, which are the most challenging for caregivers [4]. Furthermore, studies have been made in Italy. Limongi

BACKGROUND
Globally, the burden of Dementia disease has increased in recent years. The long duration of Dementia before death affect significantly to the public health impact of the disease because Dementia patients spend most of their time in disability and dependence [7]. The burden of caregivers is often affected by the patient's behavioral and cognitive condition, hours involved in care, stress, availability of support resources, and caregiver characteristics [8]. Formal caregivers shape the daily lives of Dementia patients and play a vital role in the care provision [9]. Formal caregiver in this study refer to the person who performs care for dementia patients in the elderly home.
Although the Family caregivers or unpaid care provider provide (80%) of the care for Dementia patients, the number of family caregivers is decreasing. There were seven caregivers for each elderly need assistance in 2010, while the number will drop to four for each one in 2030, which creates a higher demand for formal caregivers [7]. However, an increasing number of Dementia patients will increase the need for formal caregivers. Formal caregivers need to be increased from 3.27 million in 2014 to 4.56 million in 2024 [9]. In the long-term setting, the significant challenges are to retain the care providers; the turnover rate ranges from 40% to well over 100%. Policy and procedures need to be reviewed in long term setting to keep the care-provider since the demand is increased in the community [10].
In Jordan, the percentage of the elderly population will increase over the next coming years to a projected rate of 8.6% by the end of 2030 and 15.8% by the end of 2050 [3], as well as, due to demographic changes in the family support system related to youth migration and women enter the labor force, there is an increased demand for formal care. However, there are no statistics available to establish the volume of the use of formal caregivers because such arrangements poorly documented. Long term care needs related to older Dementia in Jordan tend to see as a family role or responsibility rather than governmental or societal responsibility. Moreover, Health care systems in Arab region have ignored the needs of elderly nursing homes. Charities or the private sector only initiate it. For example, In Egypt, there are 34 older adult homes for over one million older adults, and some homes have waiting lists for elderlies to be admitted in these homes [11]. While in Jordan, there are ten elderly nursing homes for over 500 thousand older adults, and these homes not a specialized unit for Dementia disease patients. The majority of the caregivers in these nursing homes are unqualified to provide dementia care, low paid, low status, no requirement for special education or training to be a caregiver, which affect negatively on the quality of care, caregivers' health, burden, and burnout [2].

Aim of the Study
This study aimed to assess the effect of an educational program on Formal Caregivers Burden in Elderly Homes.

Hypothesis
There will be a difference in Dementia formal caregivers burden test scores after implementation of the educational program compared to before.

Design
A quasi-experimental one-group pre-test-posttest with three months follow-up design was used.

Setting
This study was conducted in three elderly Private homes in Jordan. These homes were chosen because they represent the three largest homes in terms of the number of elderlies and caregivers.

Sampling
A purposive sample of 50 caregivers from elderly homes who fulfilled the inclusion criteria were included in the study. Inclusion criteria required participants to be working for at least 8 hours per day, five days per week, with at least three months' experience in their job. The data was collected within five months, from January 2019 to May 2019.

Tools of data collection
Data of this study was collected through two tools:

Scoring system
Each question has three points Likert scale with response choices ranging between Never (0), Sometimes (1), Always (2). Caregivers who got <50% were considered as having no burden at all, while those who got from 50 to <70% were considered as having moderate burden, and those who got >70% were considered as having severe burden. The scale was used before, immediately, and three months after the implementation of the program.

Validity & Reliability
Five experts from the community health nursing department, were asked to check the tools for content validity, including clarity, wording, format, and overall appearance of the tools. Modifications were made according to the panel judges. The tool was tested for reliability using Cronbach's Alpha with score of 0.76.

Data collection
Data were collected before the educational program implementation, all caregivers completed informed consent, demographic characteristics, then the pretest conducted for assessment of caregiver's burden. Post-test had been conducted immediately and three months after the educational program implementation for all caregivers.

Procedures
Upon receiving the formal approval to conduct the study, official permission was obtained from nursing homes to approve the fieldwork and collect data. The researcher explained the purpose and steps of the study to participants before the beginning of the study. Written consent was obtained from the caregivers who were included in the study. Dementia educational program for caregivers was developed through the following phases: 1. Assessment phase: assessment of caregivers' burden by using Dementia Caregiver Burden Scale. In this phase, the researcher met the caregivers' in the morning in a closed room in each elderly home. Caregivers were asked to fill out the tool in the same room during the day and the researcher remained with the caregivers while they were filling out the tools to ensure that all questions were answered and to be sure that there was no missing data, and to ensure an individualized response. -The time spent to fill the ranged between 15-20 minutes, then the researcher collected the questionnaires from each caregiver separately to check any unanswered or missed questions. The assessment phase took three weeks and the researcher visited each elderly home once/week. 2. Planning phase: based on the assessment results and comprehensive review of relevant literature, the researcher designed an educational program to decrease the level of burden among caregivers by increasing their knowledge, and improving their practices. 3. Implementation phase: in this phase, the program was implemented separately in each elderly home; The knowledge parts of the educational program were based on educating the caregivers about dementia including definition, risk factors, symptoms, stages, and methods of treatment and care. Regarding the practice part, participants were asked by the researcher about practices related to bathing, feeding, toileting, dressing, grooming, and communication. Feedback was given by the researcher. Videos were shown during this part with case scenarios demonstrations about correct practices. participants were educated also about the management of burden and stress related to caregiving through group discussions, power point presentations, and feedback. The duration of each session was about 30 minutes, the study sample in each setting was divided into three groups related to the availability of the caregivers on their time work hours, with the mean of 6 caregivers in each group. The program was implemented for each group in the same manner by the researcher. At the end of each session, the feedback was given to participants and learning moments were discussed with caregivers. The summary was given after each session. Educational aids were utilized as videos, power point presentations. 4. Evaluation phase: evaluating the effect of the educational program on burden of dementia patient's caregivers was done in this phase. The program effect was measured two times, immediately and three months after implementation of the program to evaluate the level of burden after the program.

Data Analysis
Statistical Package for the Social Sciences (SPSS) program, version 20. Numerical data were expressed as means and standard deviations. Quantitative data were expressed as frequencies and percentages. Comparison between pre-test, post-test, and 3 months follow up test was done by using t-test and ANOVA.     of the caregivers were providing care for more than seven patients per day. Regarding the income, 58% of the caregivers reported that their income not enough, while 38% of them reported that their income was enough. Table 2 shows that, mean of burden items was decreased in post and follow up tests. There was improvement in caregivers burden scores, and this improvement was statistically highly significant after educational program implemented (p<.001). Fig. 1 shows that 64% of caregivers had severe burden before the implementation of program, while 32% and 80% respectively of caregivers had no burden immediately and three months after program implementation. Table 3 shows that a highly statistical correlation was found between caregivers' total burden scores and caregivers' educational level, working hours and patient number assigned /day. Also, a statistically significant correlation was found between caregivers' total burden scores and their gender and years of experience.

DISCUSSION
This study assessed the effect of an educational program on Formal Caregivers Burden in Elderly Homes employing a quasi-experimental onegroup pre-test-post-test design in nursing private homes in Amman, Jordan among 50 formal caregivers. Overall, the study revealed that majority of the respondents are female, almost half of them are 18 years old, married, High school graduate, with 1 to <5 years of experience, working from 8 to 12 hours, caring for more than 7 patients, and not enough income ( Table 1).
The current study revealed that nearly two-thirds of the caregivers had severe burden before program implementation, while nearly two-thirds had moderate burden immediately after program implementation, and more than three quarters had no burden three months after program implementation (Figure 1), with a statistically significant difference of caregiver's total burden score before, immediately and three months after program implementation (Table 2). These findings were supporting research hypothesis. This decreasing in burden level among caregivers after program indicated that intervention such as education & training maybe support them in their role and decrease their burden related to caregiving.
Previous results are congruent with a study done by Takizawa, Takahashi, Takai, Ikeda, and Miyaoka [12] in Malaysia, he found that , individual coping skills improved in providing nursing care and reduced burden scores after training program. Another systematic review and meta-analysis of randomized controlled trials conducted by Jensen, Agbata, Canavan,and Mccarthy [13] revealed that educational programs have a positive effect on caregiver burden. In addition, Terayama et al. [14] in Tokyo, Japan stated that after three months, burden was significantly decreased in the education group. Another study was done by Weigel [15] in the USA indicating that implementation of the dementia caregiver training program resulted in decreased caregiver burden. These similarities in results suggested that receiving supportive intervention like education and training are needed to reduce the burden could have emanated from caregiving role.
Moreover, the present study results indicated a statistically significant correlation was found between caregivers' years of experience and burden of caregivers (See Table 3). The study findings are in agreement with a study conducted by Beinart, Weinman, Dementiae, and BrDementiay [16] UK who mentioned that high levels of burden were associated with caregiver years of caregiving. And with another study conducted by Wan, Chan, Yap, and Khalaf [17] in Malaysia who stated that years of experience were correlated with the high caregivers burden. This agreement in the study results maybe suggested that caregivers burden increased over the years of caregiving due to increase damage to the patient physical and mental health through the process of disease progression.
On the other hand, the results revealed that there is a statistically correlation between caregivers' gender and education level and the burden of Dementia patients' caregivers (See Table 3). This relationship may be due to diversity in caregivers' educational background, and more than three quarters were females. This finding agreed with a study done by Wan et al. [17] in Malaysia which indicated that Caregivers' burden was correlated to caregivers' gender and educational background.
Regarding the working hours, the results revealed that a highly positive correlation between working hour and caregivers' burden (See Table 3). This results indicated that providing care for longer hours for Dementia patients may increase the caregiver burden. This finding is congruent with the study conducted by Terayama et al. [14], Japan which revealed that spending a large amount of time caring for the patients is a major cause a big burden for the caregivers.
Results of the current study indicated a highly statistically significant correlation between caregiver's burden and patients number assigned/day (See Table 3). This finding may be suggested that there is a shortage number of caregivers in nursing homes, maybe due to low income, poor work environment and works overload, which required more efforts at the governmental level to prepare more caregivers, improve work environment and decrease work overload. This finding was supported by the study done by Yakubu & Schutte [18], South Africa, who mentioned that work over load were correlated positively with physical heath and burden.

CONCLUSION
Based on the study results, it is therefore concluded that the level of burden among caregivers was decreased after the program, compared to prior the education program was given. The results show that the educational program for Dementia's patient caregivers had a positive effect on their burden.

RECOMMENDATIONS
Based on the study results, the following recommendations are suggested:  Conduct continuing education program for Dementia patient's caregivers in the nursing homes to promote their knowledge and practices and decrease their burden.  Conduct future studies on large sample of caregivers of Dementia patients in different settings in the community to assess their need and improve their care with patients.

ETHICAL APPROVAL AND CONSENT
Approval to conduct the study was obtained from the general administration in each nursing homes after explanation the purpose of the study, data collection tools, and the educational program. The purpose of the study was explained to the participants by the researcher, stating the possibility to withdraw at any time. The researcher emphasized that participation in the study was entirely voluntary; written informed consent was obtained from each participant, by the researcher after explanation of the study objectives and procedures. Anonymity and confidentiality were assured through coding the data, participants were assured that all data will not be reused in another research without taking the permission of the participants Procedures.

FUNDING ACKNOWLEDGEMENT
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.