Dementia in context

The management of people with dementia is a major health challenge facing Australia in the 21st century. In this paper we argue that the management of dementia is primarily about managing the social rather than biomedical course of the disease. We are calling for more research to be conducted from a perspective that recognises the importance of better understanding the social context of dementia. Living with dementia challenges virtually all aspects of the individual with dementia’s (IWD) social relationships, from intimate partnerships to the wider community. Dementia progressively strips the IWD of the means of meeting not only their own physical needs but also of sustaining and managing their social needs and relationships at a time when they are increasingly dependent on those relationships. However, the literature on dementia still pays little attention to the way the dementia experience is embedded in contexts of social time and place. Most carer-IWD relationships do not begin, or end, with the onset of dementia but are overlaid on a history of shared experience and established dynamics, and are deeply embedded in a wider social world. The carer-IWD dementia journey can only be fully understood, not as individual experiences, but as a shared journey through social time and space. Similarly, every dementia journey is embedded in a social space with its established culture, norms and group dynamics which are likely to be challenged, re- negotiated, and possibly breached as the disease progresses. This is likely to significantly shape the journey especially in socially dense contexts such as rural communities. The dementia experience cannot be fully understood, and therefore best managed, without research which takes into account how the disease process is embedded in particular social contexts.