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61 - Volunteering for research into dementia Alzheimer's Society

Published online by Cambridge University Press:  08 January 2010

Sue Eckstein
Affiliation:
King's College London
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Summary

A great deal of research is currently being carried out into the causes of dementia, diagnosis and treatments. The progress that is beingmadeis only possible because people with dementia and their carers are willing to participate in research.

Range of research

There are many different ways in which people with dementia can take part in research. They may, for example, be asked to give a sample of their blood for use in genetic research or may be asked to take part in a drug trial.

While it is important that research is carried out, it is also important that the rights of the person with dementia are respected and their dignity maintained.

Types of research

  • Therapeutic research refers to research that may be of benefit to the person with dementia, either during the project itself or once it has been concluded.

  • Non-therapeutic research will not directly benefit those who are participating, but will add to the general body of knowledge about dementia. The findings may benefit people with dementia in the future.

If the research is non-therapeutic this must be made clear to the person with dementia before they decide whether or not to take part.

Consent

Consent must be obtained from the person with dementia before any research is carried out, even if it is simply a question of an extra blood sample. The carer's agreement is not sufficient.

Consent must be adequately informed and voluntary. The person with dementia must be aware of the purpose of the research and what is involved.

Type
Chapter
Information
Manual for Research Ethics Committees
Centre of Medical Law and Ethics, King's College London
, pp. 444 - 446
Publisher: Cambridge University Press
Print publication year: 2003

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