Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known about how people, especially those affected by cognitive impairment, understand and regard the use of ARDs, as empirical studies are mainly conducted with healthy, non-cognitively impaired, participants. This qualitative study, a sub-study of a larger study on the evaluation of ARDs in the context of dementia research in Germany, consists of semi-structured in-depth interviews with 24 persons with cognitive impairment. Our results indicate that most participants consider ARDs a valuable tool for allowing them to make their own decisions. Many would prefer to draft an ARD when they are still healthy or soon after the diagnosis of cognitive impairment. Participants suggested that the completion of ARDs can be advanced with the provision of practical support and increased dissemination of information on ARDs in society. Persons with subjective or mild cognitive impairment (SCI/MCI) suggested several motivating factors and concerns for completing an ARD. Clinicians need to be trained to accommodate patients’ needs for sufficient and adequate information. Furthermore, a standardised, partly pre-formulated template could be helpful for drafting an ARD. As such tested templates are currently not yet available, this addresses the urgent need for more translational and implementation research for the use of ARDs.

中文翻译：

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认知障碍者完成高级研究指导的动机-定性访谈研究。

与痴呆症患者进行的研究对于更好地了解痴呆症的病因并制定更有效的诊断，治疗和预防措施非常重要。有人提出将先进研究指令（ARDs）作为一种可能的解决方案，以符合道德的方式将痴呆症患者纳入研究范围。人们对人们，尤其是那些受认知障碍影响的人如何理解和重视ARDs知之甚少，因为实证研究主要是针对健康的，非认知障碍的参与者。这项定性研究是德国痴呆研究背景下对ARDs评估的一项较大研究的子研究，包括对24名认知障碍患者进行的半结构化深度访谈。我们的结果表明，大多数参与者认为ARDs是让他们做出自己的决定的宝贵工具。许多人希望在他们仍然健康或认知障碍诊断后不久就起草ARD。与会者建议，可以通过提供实际支持和增加在社会上传播有关ARD的信息来促进ARD的完成。有主观或轻度认知障碍（SCI / MCI）的人提出了一些动机因素和完成ARD的担忧。需要对临床医生进行培训，以适应患者对充足和充分信息的需求。此外，标准化的，部分预先制定的模板可能有助于起草ARD。由于此类测试模板目前尚不可用，