Diverging medical and legal perceptions of the need for legal guardianship in people with dementia: A qualitative study.

BACKGROUND: Dementia is assumed to alter mental capacity, which may necessitate legal guardianship. However, only limited research exists on how dementia affects mental capacity, and most studies have focused solely on a medical perspective and concentrate on memory functions. The aim of this qualitative study was to investigate physicians' and legal experts' perceptions on a broad range of cognitive and neuropsychiatric domains potentially affecting mental capacity and the need for guardianship in people with dementia. METHODS: Physicians (N = 30) and legal experts (N = 20) participated in semi-structured individual interviews. The data were analyzed by using content analysis and further semi-quantified according to the cognitive and neuropsychiatric domains. RESULTS: Physicians considered neuropsychiatric symptoms and executive dysfunction to be the most important deficits in the legal context, while legal experts highlighted episodic memory impairment and dyscalculia. Perceptions regarding the importance of several cognitive and neuropsychiatric symptoms varied between and within the professional groups. CONCLUSIONS: Physicians and legal experts diverged in their perceptions of cognitive and neuropsychiatric domains affecting mental capacity and the need for guardianship. The evaluation and influence of medical evidence among legal experts heavily rely on subjective opinions. Given the substantial potential impact on patients' equal access to their rights, developing standardized guidelines is essential.

Access to justice in the light of everyday problems and prejudice: A pilot study on the experiences of people with epilepsy in Finland.

PURPOSE: The aim of this socio-legal pilot study is to gain insight into the access to justice for people with epilepsy in Finland by identifying the everyday problems experienced by them. Stigma, prejudice and their impact on the lives of people with epilepsy has been widely documented in the literature. Thus, we also wanted to explore whether there is a link between reported everyday problems and perceived prejudice. METHODS: In the first phase of the study, court cases were used to describe the everyday problems of people with epilepsy in Finland. In the second phase, descriptive statistical methods were used to analyse the survey data collected from adults with epilepsy in Finland (n = 237). RESULTS: Based on only a few existing court cases, the problems faced by people with epilepsy seem to be similar to those faced by other groups of people with disabilities. The most common problems reported by our survey respondents were related to healthcare services (73 %) and work (54 %), followed by family (25 %), mistreatment (25 %), housing (24 %) and goods and services (19 %). Both having refractory epilepsy and perceived prejudice seem to be linked with experiencing everyday problems. CONCLUSION: The results of this pilot study on the everyday problems experienced by people with epilepsy suggest that there are various gaps in their access to justice, even in a developed EU country like Finland.

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.