This scoping review found evidence that caregiver burden is closely associated with the neuropsychiatric symptoms of patients with dementia. The burden felt by caregivers not only affected their psychological and emotional well-being but also their financial wellbeing and other aspects of their quality of life. As a result of such a burden, isolation from society is observed which can further lead to anxiety and depression.
These findings in Asian countries context are consistent with recent studies from high-income Western countries (Gimeno et al., 2021), (Seidel & Thyrian, 2019). In the study conducted by Gimeno et al., (2021) in Spain, the existence of behavioral changes such as aggression, depression, anxiety, euphoria, apathy, lack of inhibition, irritability, motor hyperactivity, loss of interest and distress were found to have a substantial positive connection to the caregiver burden. Similarly, the study conducted by Seidel & Thyrian, (2019) in Germany also reached the same conclusion, where family caregivers perceived a higher burden due to cognitive impairment as well as aggressive and disoriented behavior of the person with dementia.
Surprisingly, this scoping review found in one of the studies that younger caregivers with higher levels of education were likely to feel more stressed when caring for PWD (Pinyopornpanish et al., 2021). Another study of adult caregivers with high levels of education had a different finding, in that the caregivers reported the burden of stress came from their family responsibilities rather than their caring role. (Gómez-Gallego & Gómez-Gallego, 2021). This different finding may be due to the limitation of the study in adults, or the inherent nature of responsibilities which often increase as people age. Although younger caregivers may have family responsibilities, they naturally have no such comparison to responsibilities experienced by their older caregivers. Other studies in Asia have found that caregiver burden has no association with caregiver characteristics such as age, gender, marital status and education level (Kamalzadeh et al, 2020), (Rosdinom et al, 2011). However, it is important to note that these studies have a small sample size which may have limited the chances of finding statistically significant associations between burden of care and other sociodemographic factors. The findings in this research did not show any difference with either of the socioeconomic groups.
Caregiving activities which are often related to the basic routines of daily living as well as providing psychological and emotional support, were viewed as a difficult task and were frequently associated with caregiver burden. Family caregivers must deal with changing their own expectations and unpredictable behaviors as a result of the persistent cognitive impairment in the PWD. Informal caregivers frequently put their own needs and well-being on hold to care for a loved one. When it comes to the caregivers' quality of life, it was found that the physical well-being of caregivers of PWD is related to the neuropsychiatric symptoms of PWD. This finding correlates to studies in this Asian context, where neuropsychiatric symptoms such as anxiety, agitation, disinhibition, violent behavior, and sleep disorders are more closely linked to a higher caregiver burden, and to greater unfavorable outcomes such as a decline in the caregivers’ general health and quality of life, and an increase in their social isolation (Isik et al, 2019), (Majer et al., 2020), (Ryu et al., 2011).
Informal caregivers of PWD in high-income countries like Japan also experience significantly greater burden compared to formal caregivers even after matching caregivers against with similar baseline characteristics. This conforms with other non-Asian populations in high-income countries, such as Germany, where caregivers of PWD are associated with poorer health, and higher levels of caregivers’ subjective burden and depression predict the caregivers’ lower quality of life (Karg et al., 2018).
Another finding in this scoping review was the psychological and social impacts of caregivers of PWD in the high-income countries in Asia correlates with that seen in low-middle-income Asian countries as both are profoundly impacted. This study result is consistent with findings of previous studies done in Asia which analyzed the impact of providing a caring role among caregivers of PWD across different socioeconomic status. This finding is in keeping with the cultural background and values of the people, as in the Asian context, where caregiving for the elderly are considered as the responsibilities of the immediate relatives, as well-established and well-funded community care and home care for the elderly are foreign practices and are somewhat uncommon (Chan, 2010; Chia-Hui et al., 2020). Responsibility of caring for elderly persons in Asia rests on the younger members of families, and especially on females (Chan, 2010). However, this does vary across countries. In this study, we found that most informal caregivers of PWD are predominantly daughters and daughter-in-laws, followed by sons, son-in-laws and spouses, mainly live-in carers. Consistent with the findings of other studies, the level of impact of dementia on caregivers is significantly affected by conceptual and background factors peculiar to the Asian populations as demonstrated in this study.
Previous studies in Asia have focused on the overall burden associated with caregiving for people living with non-communicable diseases like cancer, hypertension, diabetes, schizophrenia, and other mental health conditions (Bauer & Sousa-Poza, 2015; Chang et al., 2010; Penning & Wu, 2015). Notwithstanding that the caregiver burden associated with dementia is an acknowledged public health priority, which the prevalence and incidence sourced from a growing number of evidence projects a continuous growth,little research has been done in the area and indicates a need for further study (World Health Organization, 2012). This study attempts to fill some of the gaps in the research by identifying the psychosocial impact of dementia care on caregivers while mapping out the most recent literature, comparing high-income with low-middle- income countries among Asian populations.
Aligned with previous research, the findings of this study identified the social impact on the caregivers associated with the care of PWD. We found that male caregivers experienced higher levels of affiliate stigma compared to female caregivers and, in addition, greater affiliate stigma is associated with more significant social impact. This is different from other studies that measured a wider stigma concept. However, the finding is in line with the cultural norm in Taiwan where the role of caregiving is mainly attributed to the female gender, therefore males, when acting as caregivers, experience affiliate stigma more due to social expectations in the country. Furthermore, there has been growing evidence of the severity of the PWD on behavioral and psychological symptoms which cause unintended social isolation as a result of the high levels of dependency involved and the demands of the task (Chia-Hui et al., 2020). The findings of (Chan, 2010;Chang et al., 2010;Chia-Hui et al., 2020) are consistent with the result of this study, which identified that an increase in behavioral and psychological symptoms increase caregiver anxiety, resulting in internalizing negative views and unconsciously withdrawing from social participation and inclusion.
The financial implications associated with caregiving were remarkable. This study found that most caregivers had a significant increase in care-related expenditures, with a decrease in family income due to caregiving. Owing to the progressive nature of dementia, there was an increase in resource use and family expenditure among caregivers, and this effect is seen in both high-income and low-middle-income countries in Asia. In this review, we identified greater resource use among caregivers irrespective of the availability of more financial resources, as demonstrated by frequent presentations to the emergency room/department and other healthcare facilities. Although more research needs to be done, this finding of greater resource use may be translatable across regions/cultures, as this economic impact of the caregiver burden aligns with the cross-sectional study by (Chia-Hui et al., 2020) done in Taiwan, and also the study undertaken in Europe by (Moreno-Cámara et al., 2019). Furthermore, a remarkable number of caregivers in Japan experienced challenges maintaining their jobs, either due to impaired performance, reduced concentration as a result of being overwhelmed by the course of caring for PWD, expectations, or unavailability to work. Compared to formal caregivers, one of the primary literature in our study demonstrated that overall work impairment is higher in caregivers (P value < 0.05). We also found that educated study participants developed coping strategies to manage their work–life balance and the associated stress of caring for their family member/friend.
Additionally, in this study, a dominant factor across the high-income and low-middle-income countries was the role of filial piety on younger family members, where there is the expectation to care for and support the elderly financially, and the associated social pressures. As family is the first line of support in care of PWD, this responsibility of financial support weighs heavily on younger family members, with minimal support from the government. As the person’s health deteriorates, the financial burden increases, and adds financial strain to the family. Furthermore, in some Asian countries such as China, dementia is excluded in the intensive medical insurance care category, as seen in our study, and most of the PWD are on basic medical insurance, insufficient to cover medical expenses. This lack of financial support from the government poses a significant financial burden on the caregivers. Moreover, in this review, we found the significant positive effect of employment, as women that were unemployed had a higher chance of developing depressive symptoms due to the reduced income and social isolation of unemployment, while the employed had the ability to manage any perceived impact of dementia more capably.
Another impact identified in this study was the healthcare challenge, as in our study locations, most healthcare and support agencies are centrally located in large cities, and so difficult to access by caregivers who live in rural areas. This geographical distance from appropriate services incurs a notable financial burden due to logistics and increased resource use by the caregivers, adding to the already substantial cost in the role.
Limitations
The review used an extensive and systematic search strategy in an attempt to summarize evidence in relation to the research question. However, despite these attempts, not all studies fulfilling the inclusion and exclusion criteria were captured by the search. Moreover, the study only included six Asian countries and does not involve Western countries. Nevertheless, in Asian countries, similarities in culture and socio-economic status exist sufficiently among them to draw comparison. Thus, the findings of the included studies might be extrapolated to be seen as similar for all Asian countries generally.
Additionally, the evidence from this review is based on the summary of all-inclusive studies and a more rigorous systematic review and meta-analysis with a formal synthesis of evidence may be required to confirm these findings. Besides, as the study methodology was limited to articles in the English language only, studies published in other languages may have inevitably been overlooked. Also, due to time constraints, some databases have been missed during the search strategy, however, within the range of databases used, all efforts were made to include all relevant studies according to the determined set of inclusive and exclusive criteria.
Recommendations
Based on the findings from this review, it is evident that interventions focused on managing the neuropsychiatric symptoms of PWD will help reduce caregivers' burden as well as helping to improve the health of the PWD. Policymakers in the low-middle-income countries in Asia should pay close attention to the development of a low-cost but effective and sustainable dementia care service (e.g. establish accessible and affordable social support resources for caregivers in communities). This action not only would support PWD but will also provide the much-needed support to caregivers, which according to Muangpaisan et al., (2010), could lead to better care for the PWD and better health outcomes for the caregiver themselves. More research such as large longitudinal studies are also required for more robust results and to further understand the link between caregiving and quality of life.