Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care

机译：谁被告知而谁不被告知？解决痴呆症研究和护理进展的法律障碍

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Conduct of research is an essential tool for the evaluation and improvement of health services. In Israel, research on persons with dementia is very limited, with the largest portion of such research involving a few surveys and examining risk factors for dementia. Very few studies describe clinical research, and those that do either include participants at early stages of dementia, or rely completely on caregivers’ perceptions and experiences, often without reference to any individual with dementia. This dearth of research is due, to a substantial extent, to Ministry of Health regulations which do not permit family proxy consent for research involving persons with dementia. Alternative models for regulation of consent for research exist in other countries, including the U.S., and these allow for proxy consent under certain conditions. This paper presents such a model and its underlying ethical principles. It contends that the current state of affairs, which stands in the way of clinical research concerning persons with advanced dementia, is contrary to the interests of such persons, their caregivers, and Israeli society. Therefore, this paper calls for a change in the present regulations and/or law in the cause of advancing knowledge and improving care for persons with dementia.

机译：进行研究是评估和改善卫生服务的重要工具。在以色列，对痴呆症患者的研究非常有限，此类研究的大部分涉及一些调查和检查痴呆症的危险因素。很少有研究描述临床研究，而那些研究要么包括痴呆早期阶段的参与者，要么完全依赖看护者的看法和经验，而常常没有提及任何患有痴呆的个体。这项研究的缺乏在很大程度上是由于卫生部的法规，该法规不允许家庭代理人同意涉及痴呆症患者的研究。包括美国在内的其他国家/地区也有替代的监管研究同意模式，这些模式允许在某些条件下进行代理同意。本文介绍了这种模型及其潜在的道德原则。它认为，目前的状况妨碍了对晚期痴呆症患者的临床研究，这与此类人员，其护理人员和以色列社会的利益背道而驰。因此，本文要求在提高知识和改善对痴呆症患者的护理方面改变现行法规和/或法律。

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期刊名称 Israel Journal of Health Policy Research
作者
Jiska Cohen-Mansfield;
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作者单位

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年(卷),期 2019(8),-1
年度 2019
页码 17
总页数 8
原文格式 PDF
正文语种
中图分类
关键词
Dementia Informed consent Ethics Human subjects research;

机译：痴呆;知情同意;伦理学;人体研究;

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1. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries [J] . Astrid Stephan, Anja Bieber, Louise Hopper, BMC Geriatrics . 2018,第1期

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2. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries [J] . Astrid Stephan, Anja Bieber, Louise Hopper, BMC Geriatrics . 2018,第1期

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3. Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia's experiences [J] . Innes Anthea, Page Stephen J., Cutler Clare Dementia . 2016,第6期

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4. Barriers to Co-Designing Mobile Technology with Persons with Dementia and Their Carers [C] . Siobhan OCONNOR, Matt-Mouley BOUAMRANE, Catherine A ODONNELL, International Congress in Nursing Informatics . 2016

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5. The career advancement of women administrators in higher education: Trends, barriers, and progress. [D] . Freeman, Gwile Paul. 1992

机译：女管理人员在高等教育中的职业发展：趋势，障碍和进步。
6. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia informal carers and health and social care professionals in eight European countries [O] . Astrid Stephan, Anja Bieber, Louise Hopper, 2018

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7. A discussion on the legal barriers in addressing sleeping disorders in aged care using wireless technology [O] . Moloney Clint, Gururajan Raj 2004

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Who is informed and who uninformed? Addressing the legal barriers to progress in dementia research and care

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