What research we no longer need in neurodegenerative disease at the end of life : The case of research in dementia

A complete silence. That was what we got back from the European experts who had been energetically discussing research priorities in palliative care in neurodegenerative disease (ND) until a short while ago.1 The chair, an entertaining professor with good manners, must have felt the unease and quickly refocused the group to their task. But, wasn’t this the best question of all day? What research we no longer need? As scientists able to consider different perspectives, shouldn’t we have some idea of what research is, by contrast, no longer necessary? Palliative care research and research with people who have ND and are at the end of their life is, by definition, difficult. Making choices is a sensitive issue, but funds are limited. Therefore, we take a counterpoint to the research agenda recently reported by European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND),1 and consider whether there are studies we no longer need or are low priority, taking the example of dementiaPeer reviewedFinal Accepted Versio

Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

BACKGROUND: The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons. METHODS: We used a mortality follow-back design in multi-center studies in the Netherlands (pilot study 2005-2007) and the U.S.A. (1999), and we compared EOLD Satisfaction With Care (SWC; last three months of life), Symptom Management (SM; last three months) and Comfort Assessment in Dying (CAD) scores for 54 Dutch and 76 U.S. nursing home residents. RESULTS: SWC total scores did not differ significantly between the Dutch and U.S. studies (31.9, SD 4.7 versus 30.4, SD 6.1), but three of ten items were rated more favorable for Dutch residents, as were SM total scores (29.1, SD 9.2 versus 20.4, SD 10.6). CAD total scores did not differ (32.0, SD 5.4 versus 30.5, SD 5.9, respectively), but the "well-being" subscale was rated more favorably for Dutch residents. Results were similar after adjustment for demographics and dementia severity. CONCLUSION: The Dutch families rated end of life with dementia in nursing homes as somewhat better than did U.S. families. Although differences were small, the observed patterns were consistent. This suggests validity of the SM and CAD to assess differences in quality of dying and possible sensitivity to differences between countries or time frames. Larger, simultaneous, cross-national studies are needed to confirm usefulness of the scales and to detect areas which need improvement in the respective countrie

Predictors of spiritual care provision for patients with dementia at the end of life as perceived by physicians : a prospective study

Background: Spiritual caregiving is part of palliative care and may contribute to well being at the end of life. However, it is a neglected area in the care and treatment of patients with dementia. We aimed to examine predictors of the provision of spiritual end-of-life care in dementia as perceived by physicians coordinating the care. Methods: We used data of the Dutch End of Life in Dementia study (DEOLD; 2007-2011), in which data were collected prospectively in 28 Dutch long-term care facilities. We enrolled newly admitted residents with dementia who died during the course of data collection, their families, and physicians. The outcome of Generalized Estimating Equations (GEE) regression analyses was whether spiritual care was provided shortly before death as perceived by the on-staff elderly care physician who was responsible for end-of-life care (last sacraments or rites or other spiritual care provided by a spiritual counselor or staff). Potential predictors were indicators of high-quality, person-centered, and palliative care, demographics, and some other factors supported by the literature. Resident-level potential predictors such as satisfaction with the physician's communication were measured 8 weeks after admission (baseline, by families and physicians), physician-level factors such as the physician's religious background midway through the study, and facility-level factors such as a palliative care unit applied throughout data collection. Results: According to the physicians, spiritual end-of-life care was provided shortly before death to 20.8% (43/207) of the residents. Independent predictors of spiritual end-of-life care were: families' satisfaction with physicians' communication at baseline (OR 1.6, CI 1.0; 2.5 per point on 0-3 scale), and faith or spirituality very important to resident whether (OR 19, CI 5.6; 63) or not (OR 15, CI 5.1; 47) of importance to the physician. Further, female family caregiving was an independent predictor (OR 2.7, CI 1.1; 6.6). Conclusions: Palliative care indicators were not predictive of spiritual end-of-life care; palliative care in dementia may need better defining and implementation in practice. Physician-family communication upon admission may be important to optimize spiritual caregiving at the end of life

Antimicrobial Use in Patients with Dementia: Current Concerns and Future Recommendations

Infections are common in people with dementia, and antibiotic use is widespread, albeit highly variable, across healthcare settings and countries. The few studies conducted to date that consider the appropriateness of antibiotic prescribing specifically for people with dementia focus on people with advanced dementia and suggest that much of the prescribing of antibiotics for these patients may be potentially inappropriate. We suggest that clinicians must consider a number of factors to determine appropriateness of antimicrobial prescribing for people with dementia, including the risks and benefits of assessing and treating infections, the uncertainty regarding the effects of antibiotics on patient comfort, goals of care and treatment preferences, hydration status, dementia severity and patient prognosis. Future research should examine antibiotic prescribing and its appropriateness across the spectrum of common infections, dementia severities, care settings and countries, and should consider how antibiotic therapy should be considered in discussions regarding treatment preferences, goals of care and/or advance care planning between clinicians, patients and families

ADL: a graphical design language for real time parallel applications

Designing parallel applications is generally experienced as a tedious and difficult task, especially when hard real-time performance requirements have to be met. This paper discusses on-going work concerning the construction of a Design Entry System which supports the design phase of parallel real-time industrial application development. In particular, in this paper we pay attention to the development and implementation of a graphical Application Design Language. The work is part of the ESPRIT project Hamlet which focuses on industrial application of transputer-based systems for commercially strategic real-time applications

The Hamlet design entry system: an overview of ADL and its environment

Exploiting parallelism for industrial real-time applications has not received much attention compared to scientific applications. The available real-time design methods do not adequately address the issue of parallelism, resulting still in a strong need for low-level tools such as debuggers and monitors. This need illustrates that developing parallel real-time applications is indeed a difficult and tedious task. In this paper we show how problems can be alleviated if an approach is followed that allows for experimentation with designs and implementations. In particular, we discuss a development system that integrates design, implementation, execution, and analysis of real-time applications, putting emphasis on exploitation of parallelism. In the paper we primarily concentrate on the support for application *design*, as we feel that parallelism should essentially be addressed at this level

De broedziekten van honingbijen, herkenning en bestrijding

In het broed van honingbijen komt een aantal broedziekten voor. Deze brochure beschrijft deze ziekten en hoe ze (preventief) bestreden moeten worden. De belangrijkste twee ziekten, Amerikaans Vuilbroed en Europees Vuilbroed krijgen bijzondere aandach

Physically active lessons in schools: A systematic review and meta-analysis of effects on physical activity, educational, health and cognition outcomes

Objective: This review provides the first meta-analysis of the impact of physically active lessons on lesson-time and overall physical activity (PA), as well as health, cognition and educational outcomes. // Design: Systematic review and meta-analysis of controlled studies. Six meta-analyses pooled effects on lesson-time PA, overall PA, in-class educational and overall educational outcomes, cognition and health outcomes. Meta-analyses were conducted using the metafor package in R. Risk of bias was assessed using the Cochrane tool for risk of bias. // Data sources: PubMed, Embase, PsycINFO, ERIC and Web of Science, grey literature and reference lists were searched in December 2017 and April 2019. // Studies eligibility criteria: Physically active lessons compared with a control group in a randomised or non-randomised design, within single component interventions in general school populations. // Results: 42 studies (39 in preschool or elementary school settings, 27 randomised controlled trials) were eligible to be included in the systematic review and 37 of them were included across the six meta-analyses (n=12 663). Physically active lessons were found to produce large, significant increases in lesson-time PA (d=2.33; 95% CI 1.42 to 3.25: k=16) and small, increases on overall PA (d=0.32; 95% CI 0.18 to 0.46: k=8), large, improvement in lesson-time educational outcomes (d=0.81; 95% CI 0.47 to 1.14: k=7) and a small improvement in overall educational outcomes (d=0.36; 95% CI 0.09 to 0.63: k=25). No effects were seen on cognitive (k=3) or health outcomes (k=3). 25/42 studies had high risk of bias in at least two domains. // Conclusion: In elementary and preschool settings, when physically active lessons were added into the curriculum they had positive impact on both physical activity and educational outcomes. These findings support policy initiatives encouraging the incorporation of physically active lessons into teaching in elementary and preschool setting