Organizational Responses to Dementia - An Analysis of the Alzheimer's Movement in Australia
Dementia is the archetypal disease of ageing societies. Recent reports (Access Economics 2003) indicate that both the incidence and prevalence of dementia rise exponentialy with the proportion of aged in the population, and that in the absence of accurate knowledge as to the cause of dementia, or clear evidence of the efficacy of existing interventions, dementia will represent a rising cost on Australian health and welfare budgets well into the next century, as well as an increasing burden on family carers.
Alzheimer's advocacy and self help organizations have been established in each state of Australia over the last several decades in response to the rising incidence and prevalence of dementia, but the role of these organizations, the movement of which they are a part, and their formation into a federal structure have not been explicitly studied.
This paper will report on a research project examining the Alzheimer's movement nationally in Australia from its foundation in most states in the early 80's to the later formation of the national organization.
The analysis is approached in the first instance from a resource mobilization and social movement perspective, exploring the origin and development of Alzheimer's organizations in each state in quite different resource environments. It will secondly explore the changing social construction of dementia in terms of the key interest groups and stakeholders who have claimed this territory and whose 'definitions' and 'solutions' have had ascendancy at different periods of the movement's history. There would appear to be an inherent tension in the Alzheimer's movement between the personal, lived experience of dementia for individuals and families and the biomedical disease approach which is more focused on resource procurement and achieving national priority for dementia research, yet it is the keeping of these two 'world views' together in terms of 'care and cure' that is a primary challenge for the alzheimer's movement.