Covid‐19 pandemic: A curse and a blessing for informal dementia caregivers — A qualitative study

Abstract

BackgroundCaring for a relative or friend who lives with dementia is a complex and demanding process that affects the quality of life and the well‐being of the informal caregivers. Many previous studies show that informal dementia caregivers experience high levels of stress, psychological burden, and depression due to the demands of caregiving which include changes in one's personal and professional life, self‐neglect, and withdrawal from pleasurable activities. The COVID‐19 pandemic drastically changed people's lives and everyday interactions and the limited number of studies on this topic shows that it introduced additional challenges for dementia caregivers. These challenges include protecting themselves and the person they care for from infection, managing the behavioural and psychological symptoms of the disease, introducing changes in everyday routines, dealing with quarantine or isolation.MethodThe aim of this study was to gain a better insight into the experiences of informal dementia caregivers during the COVID‐19 pandemic. Semi‐structured interviews were conducted in the period of July‐September with nine participants from different countries and the data were analyzed using inductive thematic analysis resulting in extraction of five themes.ResultsThe results show that informal caregivers experience worsening of the behavioural and psychological symptoms of the person they care for, limited access to the institutions and the person they care for, fear of infection but also more free time for looking after the person with dementia.ConclusionThis was one of the first qualitative research aimed to understand the unique experiences of informal dementia caregivers during the COVID‐19 pandemic, and the first research ever that has included caregivers from North Macedonia. The results show that informal dementia caregivers experience additional burden and challenges due to the COVID‐19 pandemic which adds to their existing psychological distress. This can further compromise their health and well‐being, and result in lower quality of life for them and the person with dementia and requires more focused attention from the relevant medical and social services. It should also be taken into consideration when constructing policies for dementia management and formal support during the times of the pandemic.