Emotions, action strategies and expectations of health professionals and people with dementia regarding COVID-19 in different care settings in Switzerland: a mixed methods study

BACKGROUND: More than 55 million people are currently affected by dementia worldwide and over 144 thousand in Switzerland. In Swiss nursing homes, 47.6% of the residents had a medical diagnosis of dementia in 2014. Due to cognitive impairment, they have difficulties remembering hygiene measures or placing them in the epidemic context. This results in a higher infection risk. There are COVID-19-associated recommendations focused on dementia care management but studies simultaneously surveying and correlating perspectives of health professionals as well as people with dementia across care settings are largely lacking. This study is focused on COVID-19-associated perspectives and needs of health professionals and people with dementia across different care settings. Lessons learned from the pandemic shall be pointed out. METHODS: We conducted a mixed-methods approach based on an exploratory sequential design. Two qualitative interview rounds (n = 15 participants) and a quantitative online survey (n = 148 participants) with people with dementia, caring relatives, Advanced Practice Nurses and nursing home managers (health professionals) were performed. Data collected was performed in nursing home and home-care settings. The SQRQ checklist was used. RESULTS: Fear and uncertainty were highest at the beginning of the pandemic among the interviewed nursing professionals and nursing home managers. As a positive side effect of the pandemic, increased cohesion in care teams was reported. Some people with dementia experienced the decelerated outside world as pleasant and less challenging to master. Particularly during the first wave, nursing home managers rated political decision-making processes as being too slow, partly non-transparent, inconsistent, and sometimes inappropriate for people with dementia. CONCLUSIONS: Although the identified emotional and physical consequences of the COVID-19 pandemic are mostly negative for health professionals and people with dementia, research should also investigate potential positive side effects. Furthermore, political decisions should be passed on to care institutions as promptly, transparently, and comprehensibly as possible. The results provide guidance on dementia-focused COVID-19 management interventions incorporating lessons learned and considering the emotional impact of the pandemic in Switzerland and beyond. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-023-04315-0.