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Dementia
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Research into Communication Patterns and Consequences for Effective Care of People with Alzheimer’s and Their Carers

Ethical considerations

Antony Andreas Vass

Middlesex UniversityT.Vass{at}mdx.ac.uk

Henry A. Minardi

St Charles Hospital, London

Richard Ward

Middlesex University

Neeru Aggarwal

Middlesex University

Cydonie Garfield

Jewish Care, London

Beau Cybyk

Jewish Care, London

This article offers a critical account of the ethical issues arising from the conduct of a research project investigating communication with and between people who have a dementia. These issues are examined with the background knowledge that there are no legal precedents to guide ethical procedures when carrying out research with this client group. Yet, if such research were not undertaken, there would be no opportunity to empirically evaluate present communication and care, or to recommend alternatives to this care. To address this situation, this article outlines a protocol for addressing a variety of ethical considerations. Finally, a working model of ethical procedures when undertaking research with people who have a dementia is presented. It is recognized that this is a dynamic process and will change over time. However, a starting point is needed to begin the process of accounting for ethical issues when undertaking research with this vulnerable group.

Key Words: Alzheimer’s • consent • dementia • ethics • research

Dementia, Vol. 2, No. 1, 21-48 (2003)
DOI: 10.1177/1471301203002001993
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