Dementia is a global public health issue with an urgent need for developing newer and more effective treatment strategies. Research in the area of dementia, however, poses unique ethical and legal challenges. Epidemiological studies, studies on pharmacological and non-pharmacological interventions have to deal with obtaining consent from persons with cognitive impairments, those from diverse cultural groups and need to contend with privacy and confidentiality issues. The caregiver support intervention research has not yet translated into policy change and effective clinical care. Biomedical research that involves invasive procedures may not translate into short- or long-term therapeutic benefits but is necessary research. Palliative care research in dementia has to deal with ethical issues involving people at end-of-life research. Proposed research may not receive approval, citing necessary safeguards to the vulnerable older people against invasive studies even when it is least invasive. This article aims to review the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective.

Some of the safeguards for ethical research include determining capacity to consent, obtaining advanced directives in early stages and proxy consent from caregivers, obtaining informed consent in cognitively impaired individuals. Future research policies need to consider the logistics of involving older people in research, enhancing caregiver support, and encouraging supportive decision-making. It will also need to address developing capacity assessment tools while addressing advanced care planning that will ensure the well-being of subjects in research.

Background:

Dementia has become a global public health issue, with hospitalization rates being 65% higher in seniors with dementia than others.^1,2 The pressures on healthcare systems mean an urgent need to develop robust preventive and treatment strategies for dementia, which requires multidisciplinary research. However, the patient’s stage of illness and ability to engage in discussions around the merits of participating in research and caregiver concerns is an important aspect of dementia research.

Hence, dementia research poses unique ethical challenges compared to populations with other diseases, which has led to the evolution of an ethical framework for dementia research. This article aims to review and give a viewpoint on the ethical aspects for safeguarding vulnerable older people with dementia and the potential challenges in conducting dementia research from a researcher’s perspective.

中文翻译：

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痴呆症研究中的伦理问题

痴呆症是一个全球性的公共卫生问题，迫切需要制定更新、更有效的治疗策略。然而，痴呆症领域的研究提出了独特的伦理和法律挑战。流行病学研究、药物和非药物干预研究必须处理获得认知障碍者、来自不同文化群体的人的同意，并且需要解决隐私和保密问题。照顾者支持干预研究尚未转化为政策变化和有效的临床护理。涉及侵入性手术的生物医学研究可能不会转化为短期或长期的治疗益处，但却是必要的研究。痴呆症的姑息治疗研究必须处理涉及临终研究人员的伦理问题。提议的研究可能不会获得批准，理由是对脆弱的老年人采取必要的保护措施，即使它是最小的侵入性研究。本文旨在从研究人员的角度回顾保护易患痴呆症老年人的伦理方面以及开展痴呆症研究的潜在挑战。

伦理研究的一些保障措施包括确定同意的能力，在早期阶段获得预先指示和照顾者的代理同意，在认知障碍个体中获得知情同意。未来的研究政策需要考虑让老年人参与研究、加强护理人员支持和鼓励支持性决策的后勤工作。它还需要解决开发能力评估工具的问题，同时解决将确保研究对象福祉的高级护理计划。

背景：

痴呆症已成为全球公共卫生问题，痴呆症老年人的住院率比其他人高 65%。^1,2医疗保健系统面临的压力意味着迫切需要制定强有力的痴呆症预防和治疗策略，这需要多学科研究。然而，患者的疾病阶段和围绕参与研究的优点和照顾者关注的讨论的能力是痴呆研究的一个重要方面。

因此，与患有其他疾病的人群相比，痴呆症研究提出了独特的伦理挑战，这导致了痴呆症研究伦理框架的演变。本文旨在从研究人员的角度回顾并就保护易患痴呆症老年人的伦理问题以及开展痴呆症研究的潜在挑战提出观点。