Department of Medical Ethics and History of Medicine, University Medical Center Göttingen, Humboldtallee 36, 37073, Göttingen, Germany.
Department of Medical Humanities, University Medical Center Utrecht, Po Box 85500, 3508, GA, Utrecht, The Netherlands.
BMC Psychiatry. 2020 Jul 8;20(1):360. doi: 10.1186/s12888-020-02741-7.
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.
研究痴呆症患者对于更好地了解痴呆症的病因以及开发更有效的诊断、治疗和预防措施非常重要。预先指示（Advance Research Directives，ARDs）被认为是一种将痴呆症患者纳入研究的合理方法。尽管 ARDs 已被提议作为一种可能的解决方案，但人们，尤其是受认知障碍影响的人，对 ARDs 的理解和看法知之甚少，因为实证研究主要针对健康、非认知受损的参与者进行。
本定性研究是德国一项关于评估在痴呆症研究背景下的 ARDs 的大型研究的子研究，由对 24 名认知障碍患者进行的半结构化深度访谈组成。
我们的研究结果表明，大多数参与者认为 ARDs 是一种让他们能够自主决策的有价值的工具。许多人更愿意在健康或认知障碍诊断后不久起草 ARD。参与者建议，通过提供实际支持和增加社会对 ARDs 的信息传播，可以促进 ARDs 的完成。
有主观或轻度认知障碍（SCI/MCI）的患者提出了完成 ARD 的一些激励因素和关注点。临床医生需要接受培训，以满足患者对充分和适当信息的需求。此外，标准化、部分预先制定的模板对于起草 ARD 可能会有帮助。由于目前还没有经过测试的模板，因此迫切需要更多的转化和实施研究来使用 ARDs。
