In the Shadow of COVID-19: The Well-Being and Rights of People Living with Dementia in Finland During the Pandemic

BACKGROUND: Exceptional circumstances such as the COVID-19 pandemic increase the risk for vulnerability among people living with dementia. OBJECTIVE: This article discusses the well-being and rights of people living with dementia in Finland during the pandemic and analyses the legal framework covering the restrictions of their rights during that period. METHODS: The empirical research comprises a survey of persons with dementia (n = 31) and their family members (n = 168). The participants completed a total of 13 survey items involving questions about their well-being during the pandemic, restrictions on freedom, access to services, information on pandemic regulations and guidelines as well as possible problems with authorities. The survey included both multiple choice and open-ended questions. RESULTS: According to people with dementia and their family members, by spring 2021, the pandemic had reduced meaningful activities available to people living with dementia in Finland and decreased the number of meetings between them and other people. Many reported a decline in their physical and/or mental well-being or greater difficulty or delays in accessing social and health services. Over a third of respondents found that the right to meet people was restricted among people with dementia, and almost half of the respondents took the view that their freedom of movement was restricted. There were also major shortcomings in terms of information on restrictions. CONCLUSION: The results highlight the importance of bearing in mind the negative effects that restrictions on mobility, meeting other people and meaningful activities can have on the well-being of people living with dementia. This should be considered, for example, when reforming legislation.