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Chapter 11 - Care Planning and the Lived Experience of Dementia

Establishing Real Will and Preferences beyond Mental Capacity

Published online by Cambridge University Press:  26 May 2022

By
Tim Opgenhaffen ,
Johan Put ,
Jan De Lepeleire ,
John Keady  and
Aagje Swinnen
Edited by
Mathieu Vandenbulcke ,
Rose-Marie Dröes  and
Erik Schokkaert
Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
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Summary

There is a (r)evolution in decision-making with dementia. The traditionally applied cognitive approach based on mental capacity is radically questioned by the UN Convention on the Rights of Persons with Disabilities. Although there are still gaps in the alternative they suggest, the UN Convention should be applauded for doing justice to what a person living with dementia really wants. After setting out the puzzle raised by the UN Convention, this contribution aims to explore to what extent two already known ways of dealing with dementia could be part of the quest to uncover what a person who lives with dementia really wants. First, we look at advance care planning. As a process that foreshadows future choices, it has a major potential. Second, we shift to a less self-evident practice; existing dementia care literature that explores holistic hermeneutics and ‘in the moment’ frameworks to better understand the subjective experience of living with dementia. By looking at both a holistic hermeneutic approach and an ‘in the moment’ frame, we question whether these frameworks currently applied for understanding lived experiences of persons living dementia could be applied to disclose a person’s real will and can therewith be a footing for decision-making.

Keywords

dementiaadvance care planningshared decision-makinglegal capacity
Type
Chapter
Information
Dementia and Society , pp. 211 - 232
Publisher: Cambridge University Press
Print publication year: 2022

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