Truth in dementia care

My Living Will | 8th October 2018 | Feature post

There is a substantial article by Larissa MacFarquhar in the New Yorker magazine of 8 October 2018 about a US residential community for people with dementia that is designed to look like an old-fashioned American town square. This is intended to provide comfort through a simulation of a time and place in which the residents had been functioning well. A video by the author of the article is available. The article goes on to describe a variety of approaches to dementia care, including in Britain and the Netherlands.

One question about the simulation approach is that it requires lying to residents about where they are, which is seen by staff as compassionate deception. On the other hand, the UK Alzheimer’s Society found it hard to see how systematically deceiving someone with dementia could be part of a trusting relationship in which the person’s voice is heard and their rights promoted.

The article includes an interesting discussion of the use of advance directives (Advance Decisions in the UK), and its difficulties. For example, suppose a man believes that life with late-stage dementia is not worth living, and signs an advance directive to have all medical treatment withheld once he reaches that point; but then, when he does reach it, he seems very happy. Should the AD be respected? Is the happy person still the same man he was? One view is that an aim of an AD is to preserve a person’s dignity, and feel that their life as a whole has integrity and coherence, so the directive should be respected. The article reaches no conclusion on this difficult question.

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