University of Stirling, UK.
J Health Psychol. 2020 Mar;25(4):490-510. doi: 10.1177/1359105317720818. Epub 2017 Jul 20.
The aim of this research was to explore perceptions of stigma among people with early- and late-onset Alzheimer's disease and those who support them, using questionnaires ( = 44) and semi-structured interviews ( = 14). Perceived stigma reporting was low in the questionnaires, whereas interviews revealed higher levels of perceived stigma in the form of unpredictable reactions to diagnosis, feeling stupid and ignorance of the condition among the public. Perceived stigma was managed in similar ways across age groups, focusing on 'being the lucky ones'. Results support the need to further tackle stigma and challenge expectations, particularly given the drive to diagnose people and thereby expose them to stigma.
本研究旨在通过问卷调查（ = 44）和半结构化访谈（ = 14）的方式，探究早发性和晚发性阿尔茨海默病患者及其家属对病耻感的认知。问卷调查结果显示病耻感报告率较低，而访谈结果则表明公众对诊断后可能出现的不可预测反应、感到自己愚蠢以及对疾病的无知等方面存在更高水平的病耻感。不同年龄段患者以类似的方式处理病耻感，重点是“做幸运的人”。研究结果支持进一步解决病耻感问题和挑战社会预期的必要性，尤其是鉴于诊断的推动，这可能会使人们面临病耻感的问题。
