Awareness in dementia: Conceptual issues

Abstract

There has been a recent proliferation of studies exploring awareness in people with dementia and, as is the case with similar studies in other clinical areas, results are generally mixed and inconsistent. One of the reasons underlying variability in study results relates to the complexities around the concept of awareness itself. Two sources of conceptual problems are explored. First, the meaning of awareness is examined and, within the dementia literature, various conceptualizations of awareness are identified which could be traced to three broad frameworks within which awareness and related terms are conceived. Differences between meanings of awareness are thus highlighted and the importance of making such differences explicit in studies was discussed. Second, the relational aspect of awareness is raised as a crucial issue determining the phenomenon of awareness elicited in clinical practice. Thus, in dementia, awareness is related to various “objects” including the illness as a whole, memory problems, activities of daily living, affective changes and many others. In each case, however, the object of awareness will elicit a different phenomenon of awareness, again carrying implications for the generalizability of study results. Clarification of conceptual problems is essential for future work in this area in order that empirical studies can provide meaningful answers concerning the therapeutic and predictive validity of different aspects of awareness.

Acknowledgements

This work was carried out as part of the AWARE (awareness in early-stage dementia: understanding, assessment, and implications for early intervention) project and was supported by the European Commission, contract number QLK6-CT-2002-30491. The project was conceived and developed by members of the INTERDEM network, which is co-ordinated by Esme Moniz-Cook. Thanks are due to Frans Verhey, Bob Woods, Rebekah Pratt, and Michael Wenz, and all those who participated in the AWARE project meetings.