Advocating voice: organisational, historical and social milieux of the Alzheimer's disease movement
Advocating voice: organisational, historical and social milieux of the Alzheimer's disease movement
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DOI：
10.1111/j.0141-9889.2004.00419.x
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发表时间：
2004-09-01
影响因子：
2.9
通讯作者：
Beard, RL
中科院分区：
文献类型：
--
作者：
Beard, RL
阿尔茨海默病运动，尽管阿尔茨海默病协会表示愿意，但尚未全面利用阿尔茨海默病患者作为代言人。这一点尤其值得注意，因为阿尔茨海默氏症患者越来越多，尤其是在早期阶段，他们完全有能力主张自己的立场。对被诊断患有阿尔茨海默病的人进行定性访谈和焦点小组讨论，表明他们在为研究、实践和政策提供信息方面开始发挥积极作用。对旨在为失忆症患者争取权益的国家协会附属机构的采访描述了将这些观点纳入其中的持久斗争。虽然主要的障碍可能涉及社会内部的结构动态，使老年人和/或健忘的人蒙受耻辱，但协会本身存在明显的组织矛盾，阻碍了这种动员努力。塑造这一健康社会运动努力的动力所描绘的特征阻碍了将其所倡导的个人作为代言人的能力。
The Alzheimer's disease movement, despite the stated willingness of the Alzheimer's Association, has yet to comprehensively utilise people with Alzheimer's as spokespersons. This is particularly noteworthy given the increasing availability of those with Alzheimer's who, especially in the early stages, are fully capable of advocating their position. Qualitative interviews and focus groups with people who have been diagnosed with Alzheimer's demonstrate the active role they are beginning to take in informing research, practice and policy. Interviews with affiliates of the national association aiming to advocate for people with memory loss depict an enduring struggle to incorporate these perspectives. Although primary obstacles may involve the structural dynamics within a society that stigmatises those who are old and/or forgetful, there are clear organisational contradictions within the Association itself preventing such mobilisation efforts. The dynamics shaping this health social movement's endeavours portray characteristics that obstruct an ability to embrace as spokespersons the individuals for whom it advocates.