Person-centered dementia care during COVID-19: a qualitative case study of impact on and collaborations between caregivers

Kana Kazawa,Hidetaka Ota,Daisuke Son,Mikio Hayashi,Ayuto Kodama,Shinya Ishii,Kaoru Sugawara

doi:10.1186/s12877-022-02794-1

Abstract

BackgroundLittle is known about the actual impact of COVID-19 on caregivers of older people with dementia and resultant collaborations among them to provide continued person-centered care while undertaking infection control measures. In this study, we explored the impact of providing dementia care during COVID-19 on caregivers involved in dementia care.MethodsThis is an exploratory qualitative case study. The participants were family members living with older people with dementia, care managers, and the medical and long-term care facility staff. Data were collected from 46 caregivers via face-to-face and semi-structured interviews and analyzed using thematic analysis.ResultsThe interviews identified 22 themes related to the impact of COVID-19 on different positions of the caregivers involved in dementia care and their collaboration, and we categorized them into six categories. The core themes were “re-acknowledgement of care priorities” and “rebuilding of relationships.” When caregivers’ perceptions were aligned in the decision-making processes regarding care priorities, “reaffirmation of trust” and “strengthening of intimate relationships” emerged as positive changes in their relationships. Furthermore, the differences in the ability of each caregiver to access and select correct and appropriate information about COVID-19, and the extent of infection spread in the region were related to “anxiety during COVID-19 pandemic” and caused a “gap in perception” regarding infection control.ConclusionsThe present study clarified that the process of aligning the perceptions of caregivers to the objectives and priorities of care for older people with dementia during COVID-19 pandemic strengthened the relationships among caregivers. The findings of this study are useful for caregivers involved in person-centered dementia care.

Highlights

Little is known about the actual impact of COVID-19 on caregivers of older people with dementia and resultant collaborations among them to provide continued person-centered care while undertaking infection control measures
Worsening of behavioral and psychological symptoms such as apathy, anxiety, and agitation has been reported in older people with dementia (PWD) during COVID-19 due to cognitive decline and stress pertaining to environmental changes [6, 7]
All family members were the primary caregivers living with the older PWD, and their years of care ranged from 1 to 18 years

Summary

Introduction

Little is known about the actual impact of COVID-19 on caregivers of older people with dementia and resultant collaborations among them to provide continued person-centered care while undertaking infection control measures. The COVID-19 pandemic affected the older PWD, and their family members who provided daily care by increasing their anxiety about the risk of infection as well as the burden of care [8,9,10]. According to a national survey, as many as 55.0% of those who use public long-term care insurance (LTCI) services need care on a daily basis due to dementia [13]. Long-term care facilities decided to lock down and shifted to care that followed preventive measures including social distancing and other infection control measures [16]. The reduction or cessation of services due to the pandemic led to worsening of dementia symptoms among older PWD, and an increase in the care burden and physical and mental health problems in their families [17]

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Results

Discussion

Conclusion