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Abstract
Our improved understanding of the experience of people with dementia provides a new impetus to address legal and ethical issues. This paper explores emerging issues in relation to awareness in dementia and its impact on legal and ethical matters. The different approaches and principles demonstrated in relation to ethical issues are discussed, with an exploration of the concepts of beneficence, non-maleficence, autonomy, and paternalism. Application of these concepts is discussed in relation to advance directives, capacity, and decision making, participation in research and treatment, including informed consent, and truth telling. The tensions that exist between the imperatives of doing no harm and of maintaining autonomy in addressing legal and ethical issues are highlighted, and attention drawn to the manner in which the attribution of unawareness is used to justify withholding autonomy. The review emphasizes the importance of considering competency and awareness as being multi-faceted, to be understood in the context of social interaction.
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 Barbara Romero, Mike Wang, Linda Clare, Ivana Marková, Frans Verhey, Geraldine Kenny, Michael Wenz, Orazio Zanetti, and all those who participated in the AWARE project meetings.