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
The primary aim of this thesis was to investigate the complex relationship between pain, neuropsychiatric symptoms, and ADL functioning in persons with dementia. Furthermore, we studied the... Show moreThe primary aim of this thesis was to investigate the complex relationship between pain, neuropsychiatric symptoms, and ADL functioning in persons with dementia. Furthermore, we studied the psychometric properties of a new and universal observational pain assessment instrument Pain Assessment In Impaired Cognition: PAIC.The results of this thesis show that pain in nursing home residents with dementia is related to a decline in ADL functions, independent of dementia severity. Specifically, a decline in the ADL activities transferring and bathing.Additionally, the psychometric evaluation of the PAIC presented in this thesis not only results in a promising measurement instrument, but also provides useful information for the development and improvement of educational programmes that contribute to the utilization of the PAIC15. Show less
Vitamin D is a hormone produced in the skin via a non-enzymatic process involving ultraviolet light.It is well known that the physiology of aging makes older people particularly susceptible to... Show moreVitamin D is a hormone produced in the skin via a non-enzymatic process involving ultraviolet light.It is well known that the physiology of aging makes older people particularly susceptible to vitamin D deficiency and that, if untreated, it can have serious health consequences. This thesis deliberates on the topics of vitamin D supplementation in older people in light of the current guidelines and on the possible additional effects of ultraviolet light beyond vitamin D synthesis on nursing home residents. We present a cross-sectional study in nursing home residents aged 70 years and over designed to evaluate the efficacy of vitamin D supplementation in achieving vitamin D sufficiency. We also discuss the different supplementation strategies for nursing home residents and community dwelling persons aged 70 years and over based on a survey administered to general practitioners and elderly care physicians in the Netherlands.In the second part we concentrate on additional effects of ultraviolet light beyond vitamin D synthesis. We describe our systematic review of literature on the effect of ultraviolet light, when applied to the skin or eyes, on mood, depression and well-being. We present also our randomized controlled trial on the effect of ultraviolet radiation compared with oral vitamin D supplementation on the well-being of nursing home residents with dementia. Further we use the data of the RCT to carry out a post-hoc analysis to compare the effect of vitamin D alone compared with ultraviolet radiation on the blood pressure of old people with dementia. Show less
