Dis(cover)ing experience and meaning in ‘dementia’ : Aboriginal elders in urban Australia

Abstract

Dementia is a global phenomenon, although predominantly described in Western diagnostic terms. In remote-living Indigenous communities in Australia, dementia is almost five times as prevalent and presents at an earlier age than in the non-Indigenous population. There is no data on dementia prevalence in non-remote Aboriginal communities, and empirical research is lacking into the dementia experience in Indigenous populations. This study will investigate the lived experience of ‘dementia’ amongst Indigenous people in an urban setting. How is dementia configured and imagined? The research aims to examine the experiences and meanings of dementia in families with a dementia sufferer, its perception in the broader community, as well as, the social and cultural context in which formal (government and community) and informal (family) care giving and care seeking are experienced. Its starting point is how ‘dementia’ is lived and acted in concrete situations, and as such, a phenomenological orientation and methodology has evolved. Carers of Indigenous people with dementia will be interviewed over time to map an experience trajectory and enable participants to reflect on the meaning of their accounts. Through a process of reflection and ‘meaning making’, by both study participants and the researcher (myself), the data will be (re) interpreted in relation to, “culturally derived and historically situated interpretations of the social life-world”. Interviews with Elders groups will uncover community narratives of dementia. This presentation will address the impetus behind my choice of research methodology, including, the evolution of the study’s research questions, purpose, approach and potential application