Advocating voice: organisational, historical and social milieux of the Alzheimer's disease movement

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.