BackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal... Show moreBackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience.Aim and methodsThis article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60–90 min) organized by the research group consisting of six academic researchers.ResultsEthically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as ‘having it wrong,’ ‘not knowing,’ and ‘losing something in translation’ in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings.Discussion and conclusionApproximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty. Show less
Topic: Visual impairment (VI) and cognitive impairment (CIM) are prevalent age-related conditions that impose substantial burden on the society. Findings on the hypothesized bidirectional... Show moreTopic: Visual impairment (VI) and cognitive impairment (CIM) are prevalent age-related conditions that impose substantial burden on the society. Findings on the hypothesized bidirectional association of VI and CIM remains equivocal. Hence, we conducted a systematic review and meta-analysis to examine this bidirectional relationship.Methods: PubMed, Embase, and Cochrane Central registers were searched systematically for observational studies, published from inception until April 6, 2020, in adults 40 years of age or older reporting objectively measured VI and CIM assessment using clinically validated cognitive screening tests or diagnostic evaluation. Meta-analyses on cross-sectional and longitudinal associations between VI and CIM outcomes (any CIM assessed using screening tests and clinically diagnosed dementia) were examined. Random effect models were used to generate pooled odds ratios (ORs) and 95% confidence intervals (CIs). We also examined study quality, publication bias, and heterogeneity.Results: Forty studies were included (n=47 913 570). Meta-analyses confirmed that persons with VI were more likely to have CIM, with significantly higher odds of: (1) any CIM (cross-sectional: OR, 2.38 [95% CI, 1.84-3.07]; longitudinal: OR, 1.66 [95% CI, 1.46-1.89]) and (2) clinically diagnosed dementia (cross-sectional: OR, 2.43 [95% CI, 1.48-4.01]; longitudinal: OR, 2.09 [95% CI, 1.37-3.21]) compared with persons without VI. Significant heterogeneity was explained partially by differences in age, sex, and follow-up duration. Also, some evidence suggested that individuals with CIM, relative to cognitively intact persons, were more likely to have VI, with most articles (8/9 [89%]) reporting significantly positive associations; however, meta-analyses on this association could not be conducted because of insufficient data.Discussion: Overall, our work suggests that VI is a risk factor of CIM, although further work is needed to confirm the association of CIM as a risk factor for VI. Strategies for early detection and management of both conditions in older peoplemay minimize individual clinical and public health consequences. (C) 2020 by the American Academy of Ophthalmology Show less
Introduction: Cognitive impairment and frailty are important health determinants, independently associated with increased dementia risk. In this meta-analysis we aimed to quantify the association... Show moreIntroduction: Cognitive impairment and frailty are important health determinants, independently associated with increased dementia risk. In this meta-analysis we aimed to quantify the association of the co-occurrence of cognitive impairment no dementia (CIND) and physical frailty with incident dementia.Methods: Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were used when reporting this review. We performed a systematic search on PubMed, Web of Science, and Embase databases for relevant articles. Longitudinal studies enrolling individuals with both CIND and physical frailty and reporting dementia incidence were eligible. Pooled estimates were obtained through random effect models and Mantel-Haenszel weighting.Results: Out of 3684 articles, five (14302 participants) were included in the meta-analysis. In comparison to participants free from frailty and CIND, the pooled hazard ratio for dementia was 3.83 (95% confidence interval (CI]: 2.64-5.56) for isolated CIND, 1.47 (95%CI: 0.89-2.40) for isolated physical frailty, and 5.36 (95%CI: 3.26-8.81) for their co-occurrence.Discussion: The co-occurrence of cognitive impairment and physical frailty is a clinical marker of incident dementia. Show less
