Research Article

Carers, ethics and dementia: a survey and review of the literature

  1. Julian C. Hughes1,*,
  2. Tony Hope2,
  3. Julian Savulescu3,
  4. Sue Ziebland4

Article first published online: 14 JAN 2002

DOI: 10.1002/gps.515

Issue

International Journal of Geriatric Psychiatry

International Journal of Geriatric Psychiatry

Volume 17, Issue 1, pages 35–40, January 2002

Additional Information

How to Cite

Hughes, J. C., Hope, T., Savulescu, J. and Ziebland, S. (2002), Carers, ethics and dementia: a survey and review of the literature. International Journal of Geriatric Psychiatry, 17: 35–40. doi: 10.1002/gps.515

Author Information

  1. 1

    Newcastle General Hospital, and The Oxford Centre for Ethics and Communication in Health Care Practice (ETHOX), Oxford

  2. 2

    ETHOX, University of Oxford, Oxford

  3. 3

    Ethics Programme, Murdoch Children's Research Institute, Victoria, Australia

  4. 4

    ICRF General Practice Research Group, Department of Primary Health Care, University of Oxford, Oxford

*Gibside Unit, Centre for the Health of the Elderly, Newcastle General Hospital, Westgate Road, Newcastle upon Tyne, NE4 6BE, UK.

Publication History

  1. Issue published online: 14 JAN 2002
  2. Article first published online: 14 JAN 2002
  3. Manuscript Accepted: 30 APR 2001
  4. Manuscript Received: 12 MAR 2001

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Keywords:

  • ethics;
  • dementia;
  • carers;
  • qualitative research;
  • reciprocity;
  • autonomy;
  • personhood

Abstract

Background

Much has been written on ethical issues in dementia, but usually from the point of view of the various professionals involved. Whilst there has been an increasing amount of interest in the psychosocial problems that face the carers of people with dementia, the ethical nature of some of these problems has largely been ignored.

Objective

To review the literature on ethical issues in dementia from the perspective of the main, non-professional carers of people with dementia.

Method

A systematic literature search using Medline, Clinpsych and CINAHL databases between 1982 and 2000. A pilot study of carers.

Results

The lay perspective provides both a wide variety of issues and unique approaches. Although in the literature quantitative research answers some questions, it is qualitative research that deepens our understanding of the issues from the perspective of carers.

Conclusion

It is particularly qualitative research that brings out the ethical issues for carers, which tend to be more varied than the ethical issues raised in the professional literature. Awareness of such issues could inform and shape the support given to carers. Copyright © 2002 John Wiley & Sons, Ltd.

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