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.

Incidence and Prevalence of Early-Onset Dementia in Finland.

OBJECTIVES: Current epidemiologic data of early-onset dementia (EOD), characterized by the onset of the disease before the age of 65, are notably scarce. METHODS: We evaluated the incidence (from January 2010 to December 2021) and prevalence (on December 31, 2021) of EOD and its subtypes in 2 defined areas in Finland. All visits at the dementia outpatient clinics were manually retrospectively reviewed and reassessed (N = 12,490). RESULTS: In the population aged ≤65 years, crude incidence of EOD was 12.3/100,000 persons at risk/year based on 794 new cases from January 1, 2010, to December 31, 2021. Incidence rates for EOD were 20.5 and 33.7 per 100,000 person years in the age group of 30-64 and 45-64 years, respectively. The prevalence of EOD was 110.4 in the age group of 30-64 years and 190.3 in the age group 45-64. Alzheimer disease (AD) (48.2%) and behavioral variant frontotemporal dementia (12.7%) were the most frequent subtypes. The incidence of AD increased during the follow-up, whereas incidence of other forms of EOD remained stable. DISCUSSION: We found higher incidence rates of EOD than previously reported. Unlike other forms of EOD, the incidence of early-onset AD seems to be increasing.

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.

The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.