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Advance Directives as Support of Autonomy for Persons with Dementia? A Pilot Study among Persons with Dementia and
Martina Schmidhuber1, Sandra Haeupler2, Velislava Marinova-Schmidt2
1Institute for History of Medicine and Medical Ethics, Friedrich Alexander University Erlangen-Nürnberg (FAU), Erlangen, Germany.
Background:
Advance directives could be an important instrument to support a person's will once he/she is not able to consent anymore - if composed competently. A survey was conducted to identify the level of knowledge concerning possibilities and limits of advance directives.
Methods:
The study was conducted as part of the Bavarian Dementia Survey (BayDem). Data were collected from January 2014 to December 2015 by structured face-to-face interviews. Study participants were persons with dementia and their informal caregivers (n = 74).
Results:
In total, 66% reported having written an advance directive. Concerning the participants' knowledge about possibilities and limitations of advance directives, a lack of knowledge was noted about the possibility to revoke an advance directive. Furthermore, 70% of informal caregivers and 56% of persons with dementia were not aware of the possibility to include dementia-specific terms in the advance directive.
Conclusion:
It is necessary to optimize structures for public information and education concerning the topic of advance directives for persons with dementia.
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