Abstract

Objectives

The disclosure of an Alzheimer’s disease diagnosis poses challenges for health care professionals, patients, and their families. Past research has shown that people favour disclosure, but it is uncertain if this situation has changed.

Method

We used a cross-sectional online survey to explore disclosure preferences in a sample of young adults (n = 229; 66.7% aged 18 − 25 years, 79.5% Australian born). Factors contributing to preferences were also examined (knowledge, experience, close experience, age, relationship to diagnosis recipient). Established measures were used to assess knowledge (the Alzheimer’s Disease Knowledge Test) and preferences (the Reasons for Wanting to Know Questionnaire).

Results

Most (95%) but not all participants favoured disclosure, whilst recognising as important at least one reason against it. Only age was a significant determinant of preferences (older people were more likely to prefer disclosure). Those against disclosure cited the fear of suicide as a key reason.

Conclusion

The right to know remains a primary reason for preferring disclosure. Health care professionals should use pre-diagnostic interviewing to discuss overall preference and the underpinning reasons both for and against disclosure. Focus should be on developing a person-centred approach that responds to concerns, with further research to evaluate this approach.

中文翻译：

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支持和反对披露阿尔茨海默病诊断的理由评级：过去 20 年有什么变化吗？

摘要

目标

阿尔茨海默病诊断结果的披露给医疗保健专业人员、患者及其家人带来了挑战。过去的研究表明人们倾向于披露信息，但不确定这种情况是否有所改变。

方法

我们使用横断面在线调查来探讨年轻人样本的披露偏好（n  = 229；66.7% 年龄在 18 – 25 岁，79.5% 出生在澳大利亚）。还检查了影响偏好的因素（知识、经验、亲密经历、年龄、与诊断接受者的关系）。使用既定的措施来评估知识（阿尔茨海默病知识测试）和偏好（想要知道的原因调查问卷）。

结果

大多数（95%）但并非所有参与者都赞成披露，同时认识到至少有一个重要的反对理由。只有年龄才是偏好的重要决定因素（年龄较大的人更有可能更喜欢披露）。那些反对披露信息的人认为对自杀的恐惧是一个关键原因。

结论

知情权仍然是倾向于披露的主要原因。医疗保健专业人员应利用诊断前访谈来讨论总体偏好以及支持和反对披露的根本原因。重点应放在开发一种以人为本的方法来应对担忧，并进一步研究来评估这种方法。