Our findings showed that care manager-led information provision and practical support brought about a significant improvement in depressive tendencies, and a decreasing trend in stress (salivary amylase activity) among families of older PWD during the COVID-19 pandemic. There is no previous research on the experience of previous epidemics that includes support for the preparedness for shutting down or reduction in long-term care services due to the spread of infection, or if older PWD and their families become infected, in addition to prevention of infection and cognitive physical deterioration.
Efficacies of Care Manager-Led Information Provision and Practice Support for Prevention and Preparedness during the COVID-19 Pandemic
In this study, the IG showed an improvement in the psychological outcomes. In the free response questionnaire, some participants answered that “they understood how to cope with anxiety” and “felt secure that they would be supported (by the professionals involved).” These results suggest that while the families were anxious and stressed due to an information overload about COVID-19, the care managers provided them with personalized and appropriate coping methods; further, they understood these methods, which may lead to an improvement in their depressive tendencies. Psychoeducational interventions aimed at understanding dementia and managing behavioral changes have been reported to improve family members’ knowledge of dementia care and cognitive-behavioral mood management , and this evidence may corroborate the efficacy of this study. In addition, families of older PWD play an important role in dementia care, not only in terms of financial and emotional support, but also in advocating for their rights [26, 27]. During the COVID-19 pandemic, families were required to make difficult decisions about care policies for the older PWD, while considering the risk of infection due to face to face contact with others and deterioration of the condition due to cancellation of paid service use [28, 29]. However, face-to-face contact with healthcare professionals was limited to the minimum necessary, and the fact that they were forced to change their communication methods had a psychological impact on the families’ anxiety and sense of isolation . In such a situation, the support of the care managers based on the understanding of their conditions and lives may have reduced the families’ stress and conflicts, given them a sense of security, and improved their psychological outcomes.
Positive changes such as collaboration among informal and formal caregivers and strengthening their relationships may improve the quality of person-centered dementia care and lead to continuity of care . We believe that this meaningful finding will be a useful strategy for supporting older PWD and their families during COVID-19 pandemic.
In spite of the short-term results, families were able to deepen their understanding of preventive practices and emergency preparedness, while enhancing their readiness to practice. Improving the chronic anxiety and stress of families can lead to a reduction in their risk for various physical and psychological morbidities, including cardiovascular diseases and depression . Furthermore, it was reported that support for PWD and their families’ psychosocial and physical well-being at home (4 weeks) was beneficial for improving cognitive function of older PWD and their quality of life under COVID-19 . We believe that changes in families’ practices through this intervention will contribute to older PWD’ health. In the long term, families may practice COVID-19-related personalized dementia care and reinforce practices due to perceived benefits, such as improving the behavioral, psychosocial and health outcomes of older PWD.
However, the IG showed a slight increase in fear of COVID-19 after the intervention. This may be due to differences in the spread of infection in these regions. In this study, we did not evaluate the number of positive cases or other indicators regarding the severity of the infection spread; therefore, future studies should include such regional factors.
Implications for Proactive Support to Protect the Lives of Older PWD and their Families
Under the COVID-19 pandemic, the supply of formal services such as long-term care insurance was reduced , and connections among local residents became weaker. As a result, the content and delivery system of care for older PWD had to be changed, and the health risks for them and their families increased [33, 34]. For older PWD and their families who need care, changes in their familiar care contents and environment increased their anxiety and stress . In this study, care managers and the families of older PWD held discussions about readjustment of care, including long-term care insurance services, and emergency preparedness in case of limited access to services. For community-dwelling older PWD who need care and their families, knowing the potential risks and disruptions in the event of a disaster and taking preventive measures could help reduce its impact [36, 37]. This proactive and preventive practice will contribute to their sense of control over their own health and lives in a prolonged and unpredictable pandemic. We also believe that the findings of this study suggest that this support may be useful not only in the COVID-19 pandemic, but also in other disasters.
There were some limitations to this study. First, the characteristic neuropsychiatric symptoms associated with the primary disease of PWD are related to caregiver burden , but the primary disease was not assessed in this study. Second, we were not able to observe behavioral changes based on this intervention because we thought that non-interventions would be disadvantageous for the CG and the evaluation was set in a short period of one month. Therefore, future studies should ensure a sufficient sample size and examine the long-term effects of the interventions. Validation of the effects after stratification by primary disease may provide implications for further improvements in individualized dementia care.