The Lived Experience of Advanced Dementia - Literature Review

Background: People with advanced dementia are an under-researched group, with an inadequate level of evidence available to understand their lived experience.Aim: 1) Explore how the term ‘advanced dementia’ is used and defined within the literature 2) present what is known about the nature of awareness in people living with advanced dementia, and their lived experience and 3) highlight gaps in the literature and understanding. Methods: Literature was identified through a comprehensive search of academic databases across relevant disciplines (ASSIA, CINAHL, Embase, Google Scholar and PsycInfo). Findings: There was a dearth of literature available on the areas of interest. There is no consensus on a definition of advanced dementia in the literature and an absence of evidence that considers the holistic experience of the progressed illness. Literature is largely focused on the physical experience of advanced dementia. There is also a lack of research on how the neurological, psychological and social understandings can inform each other. Conclusion: Further research is necessary to understand the subjective lived experience of advanced dementia and provide a meaningful definition that can support those living with the illness, inform practice and counteract stigma in society