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

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 clinic...

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Bibliographic Details
Published in:International psychogeriatrics 2002-03, Vol.14 (1), p.39-45
Main Authors: Mastwyk, Maree, Ritchie, Craig W., LoGiudice, Dina, Sullivan, Karen A., Macfarlane, Stephen
Format: Article
Language:English
Subjects:
Aged
Aged, 80 and over
Alzheimer Disease - drug therapy
Alzheimer's disease
Attitude to Health
Biological and medical sciences
Caregivers
Caregivers - education
Caregivers - psychology
Clinical trials
Clinical Trials as Topic - standards
Family - psychology
Family environment. Family history
Female
Health Knowledge, Attitudes, Practice
Helping Behavior
Humans
Male
Medical sciences
Motivation
Patient Selection
Psychology. Psychoanalysis. Psychiatry
Psychopathology. Psychiatry
Retrospective Studies
Social psychiatry. Ethnopsychiatry
Surveys and Questionnaires
Treatment Outcome
Victoria
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Summary: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.
ISSN:1041-6102
1741-203X
DOI:10.1017/S1041610202008268