In this paper we aim to contribute to the elaboration of a framework for the systematic periodisation of health social movement organisations (HSMOs). Drawing on historical and contemporaneous data on two organisations that identify as Alzheimer’s disease movement organisations, we consider transformations in these organisations’ ‘cause regimes’. By cause regime we refer to who and what a HSMO is fighting for, as articulated in its public self-identifications. Additionally, it refers to the broader framing of the cause, for example, as a political or charitable one. Lastly, the concept underscores how organisations’ public self-identifications of their cause can govern or regulate their operation, including their interactions with and representations of those on whose behalf they advocate. As we will show, the transformation of a HSMO’s cause regime can give rise to a series of organisational tensions and challenges, including the alignment of the public identification of its cause with the patient identities it promotes, or its day-to-day ‘patient identity work’.
Initially, the cause around which the first two Alzheimer’s disease movement organisations established in Europe that are the focus of our empirical analysis – the Alzheimer’s Society in Britain and the Alzheimer Society of Ireland - was to provide support to family carers of people diagnosed with the disease. Now, however, both publicly identify as carers’ and patients’ organisations, reflecting a process of hybridisation of their cause. The historical research presented here traces the two Alzheimer’s disease organisations’ trajectories towards this new orientation that recognises patients as their primary constituency, alongside of carers. Notwithstanding public pronouncements suggesting that the hybridisation of these organisations is complete, we highlight ongoing organisational tensions and the magnitude of the challenges arising from this shift.