Milne Richard, Diaz Ana, Badger Shirlene, Bunnik Eline, Fauria Karine, Wells Katie
Institute of Public Health, University of Cambridge, UK.
Alzheimer Europe, Luxembourg.
Sociol Health Illn. 2018 Jul;40(6):969-987. doi: 10.1111/1467-9566.12731. Epub 2018 Apr 16.
Biomedical research aimed at the development of therapies for chronic and late-onset conditions increasingly concentrates on the early treatment of symptom-less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier stages of disease and prompt concerns about the implications of communicating test results associated with the risk of developing dementia when no effective treatments are available. This article examines expectations of the implications of learning test results related to dementia risk, based on focus group research conducted in the UK and Spain. It points to the extended social and temporal aspects of the dementia risk experience. Three key dimensions of this risk experience are elaborated: living 'at risk', represented in efforts to reduce risk and plan for the future; 'with risk', through vigilance towards cognitive health and earlier or prolonged contact with healthcare services; and finally, 'beyond risk' through a cessation of the self in its current social, legal and financial form. A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA.
旨在开发慢性和迟发性疾病治疗方法的生物医学研究越来越关注无症状疾病的早期治疗。当代痴呆症研究的显著转变就证明了这一广泛趋势。修订后的诊断标准和新的临床试验方法建议将重点放在疾病的早期阶段，并引发了人们对在没有有效治疗方法的情况下传达与患痴呆症风险相关的检测结果所带来影响的担忧。本文基于在英国和西班牙进行的焦点小组研究，探讨了对了解与痴呆症风险相关的检测结果所产生影响的期望。它指出了痴呆症风险经历在社会和时间方面的延伸。阐述了这种风险经历的三个关键维度：“处于风险中”生活，体现在降低风险和为未来做规划的努力中；“伴随着风险”，通过对认知健康的警惕以及更早或更长时间地接触医疗服务来体现；最后，“超越风险”，即通过停止当前社会、法律和经济形式下的自我来实现。本文的虚拟摘要可在以下网址查看：https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA 。
