Family carers, ethics and dementia: an empirical study

Clive Baldwin

in Empirical Ethics in Psychiatry

Published on behalf of Oxford University Press

Published in print February 2008 | ISBN: 9780199297368
Published online February 2013 | e-ISBN: 9780191754586 | DOI:

Series: International Perspectives in Philosophy & Psychiatry

Family carers, ethics and dementia: an empirical study

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The onset and progression of dementia can turn the moral world of carers upside down. In the face of such upheaval carers attempt to create an inhabitable moral world through the application of a range of (sometimes revised) ethical principles within a framework of meaning drawn from relationships, shared histories, and other socio-cultural reference points. These principles and reference points may be different to those of health care professionals but are not necessarily or generally as adverse or hostile to them as the quote from Participant 52 above would suggest, as the deployment of similar, if not identical, principles indicate:

But when I was looking after my wife I didn't need any help, she, was the one, so everything really was gravitated toward providing or doing whatever was in her best interests, you know (Participant 33).

… but its only in recent months that I've realised that it is possible to, to maintain something of the independence that, uh, she had before, uh, by giving her choices in, in often very small matters, but sometimes in quite, quite large matters, and always, always consulting her about things (Participant 7).

In drawing on principles and bases to justify their actions carers attempt to present themselves as having tried to act with probity – in Baruch's terms as ‘morally adequate’ (Baruch 1981) – in the face of both adversity and the inadequacies of previously held moral beliefs. (For example, taking action that might constrain or be against the wishes of the person living with dementia the action may be justified in terms of safety or best interests.) It is possible, however, to find resonances of many different ethical theories both within and across transcripts: principalism, the ethics of care, narrative ethics, consequentialism, deontology, personalism – though this is not the language of family carers. This moral positioning is important in understanding the realization of values by everyday actors, not as the application of a neatly worked out theoretical stance but as a unique and flexible configuration of values, principles, theory, and experimentation. Essentially everyday ethics is a performative practice, a realization (making real) of values and ethical principles in social context.

In identifying ethical issues and the values and reasoning behind ethical decisions the project has enhanced our understanding of the moral lives of family carers of people with dementia and has provided rich data for further ethical analysis. In so doing, it has illustrated the potential of the cyclical model of empirical ethics and, hopefully, contributed in some small way to the field.

Chapter.  6270 words. 

Subjects: Psychiatry

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