Palliative Care and Dementia

This paper was commissioned by Alzheimer's Australia to promote discussion by people with dementia, their families and carers of the issues that may be faced as people with terminal dementia move towards death. A palliative care approach will also be appropriate when a person with dementia has another terminal condition

O Instrumento Relacional da Investigação em Arte: Apoiando participantes e pesquisadores de origens não-artísticas para se engajarem na a/r/ tografia

This article argues the potential for a / r / tographic inquiry within sport and exercise research contexts, and outlines how a relational art inquiry tool (RAIT) was developed to support non-Arts background participants to enact a / r / tography. Prior to this investigation, a / r / t / ography methodology has been primarily used within social science and arts contexts, with qualitative sport and exercise researchers yet to employ the approach. Due to the embodied ways of knowing and evocative potential integral to a / r / tographic research, this research sought to devise a set of guiding tools that could be used to support researchers and participants from non-Arts backgrounds. This was done as a way of assisting them to see and find ways to visually articulate complexity, uncertainty and potential 'unseens' occurring within storied accounts. Development of the RAIT tool is informed by a diverse range of theory and ideas underpinning a / r / tography methodology (Irwin, 2004), Gallas' elements of inquiry (2011) and Hetland's Studio Habits of Mind (2013). In this paper, we present the results of the RAIT tool and the results obtained in this study. The results of this study are presented in the following section.Este artigo debate o potencial para uma investigação a/r/tográfica dentro dos contextos do esporte e da pesquisa de exercícios. Ele descreve como um Instrumento Relacional de Investigação em Arte (IRIA) foi desenvolvido para auxiliar participantes fora do campo das artes a realizar a a/r/tografia. Antes desta investigação, a metodologia a/r/tográfica foi usada principalmente nos contextos de Ciências Sociais e Artes, já com pesquisadores de esporte e exercício qualitativo ainda não empregaram esta abordagem. Devido às formas incorporadas de conhecimento e o potencial evocativo uma investigação a/r/tográfica, esta pesquisa procurou elaborar um conjunto de instrumentos orientadores que poderiam ser usados para apoiar pesquisadores e participantes a se envolverem com a a/r/tografia. Isso foi feito como uma forma de ajudá-los a ver e encontrar maneiras de articular a complexidade, a incerteza e o potencial do “não visto” ocorrendo em narrativas. O desenvolvimento da ferramenta RAIT é baseado em uma gama diversificada de teoria e ideias que sustentam a metodologia a/r/tográfica (IRWIN,2004), os elementos de indagação de Gallas (2011) e os hábitos da mente de Hetland (2013). Ao abraçar o potencial a/r/tográfico dentro de um contexto de pesquisa de esporte e exercício, este artigo ilustra como a ferramenta RAIT foi desenvolvida e depois testada para cultivar compreensões transformadoras e interpretação da cultura da natação através de um proocesso de desenvolvimento relacional e criativo

Volume 11

Table of Contents: Introduction, Dr. Roger A. Byrne, Dean From the Editor, Dr. Larissa Kat Tracy From the Designers, Rachel English, Rachel Hanson Synthesis of 3,5-substituted Parabens and their Antimicrobial Properties, Jacob Coarney, Ryan White Chernobyl: Putting Perestroika and Glasnot to the Test, Joseph Hyman Art by Jenny Raven Watering Down Accessibility: The Issue with Public Access to Alaska\u27s Federal Waterways, Meagan Garrett Why Has the Democratic Republic of the Congo outsourced its Responsibility to Educate its Citizens? Ibrahim Kante Art by Summer Meinhard A Computational Study of Single Molecule Diodes, Lauren Johnson Satire of the State through Discourse: Applying Althusser and Bakhtin, William Dean Howells Editha , Glen Spencer Design by Laura Gottschalk Why did the United Kingdom Vote to Leave the European Union?, Christopher Siefke Art by Pink Powell Art by Natasha Woodmany Method of Detection of PFOA in Water Samples, Katharine Colley Art by Abbey Mays The Rhetorical Construction of eSports\u27 Legitimacy, Charlotte Pott

A qualitative study of professional and client perspectives on information flows and decision aid use

<p>Abstract</p> <p>Background</p> <p>This paper explores the meanings given by a diverse range of stakeholders to a decision aid aimed at helping carers of people in early to moderate stages of dementia (PWD) to select community based respite services. Decision aids aim to empower clients to share decision making with health professionals. However, the match between health professionals' perspectives on decision support needs and their clients' perspective is an important and often unstudied aspect of decision aid use.</p> <p>Methods</p> <p>A secondary analysis was undertaken of qualitative data collected as part of a larger study. The data included twelve interviews with carers of people with dementia, three interviews with expert advisors, and three focus groups with health professionals. A theoretical analysis was conducted, drawing on theories of 'positioning' and professional identity.</p> <p>Results</p> <p>Health professionals are seen to hold varying attitudes and beliefs about carers' decision support needs, and these appeared to be grounded in the professional identity of each group. These attitudes and beliefs shaped their attitudes towards decision aids, the information they believed should be offered to dementia carers, and the timing of its offering. Some groups understood carers as needing to be protected from realistic information and consequently saw a need to filter information to carer clients.</p> <p>Conclusion</p> <p>Health professionals' beliefs may cause them to restrict information flows, which can limit carers' ability to make decisions, and limit health services' ability to improve partnering and shared decision making. In an era where information is freely available to those with the resources to access it, we question whether health professionals should filter information.</p

Roadmap for a sustainable circular economy in lithium-ion and future battery technologies

The market dynamics, and their impact on a future circular economy for lithium-ion batteries (LIB), are presented in this roadmap, with safety as an integral consideration throughout the life cycle. At the point of end-of-life (EOL), there is a range of potential options—remanufacturing, reuse and recycling. Diagnostics play a significant role in evaluating the state-of-health and condition of batteries, and improvements to diagnostic techniques are evaluated. At present, manual disassembly dominates EOL disposal, however, given the volumes of future batteries that are to be anticipated, automated approaches to the dismantling of EOL battery packs will be key. The first stage in recycling after the removal of the cells is the initial cell-breaking or opening step. Approaches to this are reviewed, contrasting shredding and cell disassembly as two alternative approaches. Design for recycling is one approach that could assist in easier disassembly of cells, and new approaches to cell design that could enable the circular economy of LIBs are reviewed. After disassembly, subsequent separation of the black mass is performed before further concentration of components. There are a plethora of alternative approaches for recovering materials; this roadmap sets out the future directions for a range of approaches including pyrometallurgy, hydrometallurgy, short-loop, direct, and the biological recovery of LIB materials. Furthermore, anode, lithium, electrolyte, binder and plastics recovery are considered in order to maximise the proportion of materials recovered, minimise waste and point the way towards zero-waste recycling. The life-cycle implications of a circular economy are discussed considering the overall system of LIB recycling, and also directly investigating the different recycling methods. The legal and regulatory perspectives are also considered. Finally, with a view to the future, approaches for next-generation battery chemistries and recycling are evaluated, identifying gaps for research. This review takes the form of a series of short reviews, with each section written independently by a diverse international authorship of experts on the topic. Collectively, these reviews form a comprehensive picture of the current state of the art in LIB recycling, and how these technologies are expected to develop in the future

Defining Natural History: Assessment of the Ability of College Students to Aid in Characterizing Clinical Progression of Niemann-Pick Disease, Type C

Niemann-Pick Disease, type C (NPC) is a fatal, neurodegenerative, lysosomal storage disorder. It is a rare disease with broad phenotypic spectrum and variable age of onset. These issues make it difficult to develop a universally accepted clinical outcome measure to assess urgently needed therapies. To this end, clinical investigators have defined emerging, disease severity scales. The average time from initial symptom to diagnosis is approximately 4 years. Further, some patients may not travel to specialized clinical centers even after diagnosis. We were therefore interested in investigating whether appropriately trained, community-based assessment of patient records could assist in defining disease progression using clinical severity scores. In this study we evolved a secure, step wise process to show that pre-existing medical records may be correctly assessed by non-clinical practitioners trained to quantify disease progression. Sixty-four undergraduate students at the University of Notre Dame were expertly trained in clinical disease assessment and recognition of major and minor symptoms of NPC. Seven clinical records, randomly selected from a total of thirty seven used to establish a leading clinical severity scale, were correctly assessed to show expected characteristics of linear disease progression. Student assessment of two new records donated by NPC families to our study also revealed linear progression of disease, but both showed accelerated disease progression, relative to the current severity scale, especially at the later stages. Together, these data suggest that college students may be trained in assessment of patient records, and thus provide insight into the natural history of a disease

Delineating the molecular and phenotypic spectrum of the SETD1B-related syndrome

Purpose: Pathogenic variants in SETD1B have been associated with a syndromic neurodevelopmental disorder including intellectual disability, language delay, and seizures. To date, clinical features have been described for 11 patients with (likely) pathogenic SETD1B sequence variants. This study aims to further delineate the spectrum of the SETD1B-related syndrome based on characterizing an expanded patient cohort. Methods: We perform an in-depth clinical characterization of a cohort of 36 unpublished individuals with SETD1B sequence variants, describing their molecular and phenotypic spectrum. Selected variants were functionally tested using in vitro and genome-wide methylation assays. Results: Our data present evidence for a loss-of-function mechanism of SETD1B variants, resulting in a core clinical phenotype of global developmental delay, language delay including regression, intellectual disability, autism and other behavioral issues, and variable epilepsy phenotypes. Developmental delay appeared to precede seizure onset, suggesting SETD1B dysfunction impacts physiological neurodevelopment even in the absence of epileptic activity. Males are significantly overrepresented and more severely affected, and we speculate that sex-linked traits could affect susceptibility to penetrance and the clinical spectrum of SETD1B variants. Conclusion: Insights from this extensive cohort will facilitate the counseling regarding the molecular and phenotypic landscape of newly diagnosed patients with the SETD1B-related syndrome

The introduction history of Hordeum vulgare var. nudum (naked barley) into Fennoscandia

Hordeum vulgare var. nudum (naked barley) is one of the oldest and most common cereals found from Neolithic Fennoscandia. After the Bronze Age, naked barley largely disappeared and was replaced by Hordeum vulgare var. vulgare (hulled barley) and other cereals. During the early 19th century, naked barley of Asian origins was reintroduced to Fennoscandia. In this study, we have genetically characterized samples of Fennoscandian landraces of naked barley which were preserved in gene banks and museum collections. The analyses show that the Fennoscandian naked barley can be split into three groups: First, naked two-row barley, with a likely origin in Asia; second, naked six-row barley, with a likely origin in the eastern Himalayas and introduced during the 19th century; third, naked six-row barley genetically related to the original Fennoscandian hulled barley. The results suggest that this last group represents the ancient form of naked barley, which was possibly introduced in the Neolithic. At that time both naked and hulled barleys were grown and enough gene flow probably occurred between these two subspecies to create a Fennoscandian barley that is genetically distinct, irrespective of whether it is hulled or naked. This hypothesis was further supported by genotyping of the Nud gene, which is responsible for the naked phenotype. All naked barleys which we studied contained the same mutation allele, nud1.a, thus showing that naked Fennoscandian barley arose by crossings between naked and hulled barley and not by new mutations of hulled barley