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Carer Impressions of Participation in Alzheimer's Disease Clinical Trials: What Are Their Hopes? And Is It Worth It?

Published online by Cambridge University Press:  10 January 2005

Maree Mastwyk ,
Craig W. Ritchie ,
Dina LoGiudice ,
Karen A. Sullivan  and
Stephen Macfarlane
Maree Mastwyk
Affiliation:
Mental Health Research Institute, Parkville, Australia Department of Pathology, University of Melbourne, Parkville, Australia
Craig W. Ritchie
Affiliation:
Department of Pathology, University of Melbourne, Parkville, Australia Royal Free Campus, University College, London, UK
Dina LoGiudice
Affiliation:
Melbourne Extended Care and Rehabilitation Service, National Aging Research Institute, Parkville, Australia
Karen A. Sullivan
Affiliation:
School of Psychology and Counselling, Queensland University of Technology, Queensland, Australia
Stephen Macfarlane
Affiliation:
Mental Health Research Institute, Parkville, Australia Department of Pathology, University of Melbourne, Parkville, Australia
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Abstract

Background: We aimed to assess why carers seek participation for their relatives in clinical trials of Alzheimer's disease (AD) medications, and to assess carer impressions of the value of trial participation. Method: A retrospective questionnaire was sent to 31 carers of participants in clinical trials for AD conducted at the Mental Health Research Institute and the National Aging Research Institute between January 1997 and December 1999. Results: Twenty-five questionnaires (81%) were returned, completed to an extent to permit analysis. Helping a relative feel better, contributing to medical science, and hoping for a cure were the main reasons for trial participation. In general, carers found the regular consultation with research staff supportive and would recommend trial participation to others. Conclusion: A greater understanding of the motivations of carers may aid the recruitment and retention of participants in clinical trials.

Keywords

Alzheimer's diseaseclinical trialscarersexpectationsfollow-upsupportmotivation
Type
Articles
Information
International Psychogeriatrics , Volume 14 , Issue 1 , March 2002 , pp. 39 - 45
Copyright
© 2002 International Psychogeriatric Association

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