title: Carer impressions of participation in Alzheimer's disease clinical trials: what are their hopes? And is it worth it?
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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  A greater understanding of the motivations of carers may aid the recruitment and retention of participants in clinical trials.
authors.affiliation: Mental Health Research Institute, Parkville, Australia. M.Mastwyk@papyrus.mhri.edu.au
authors.forename: Maree
authors.initials: M
authors.lastname: Mastwyk
authors.forename: Craig W
authors.initials: CW
authors.lastname: Ritchie
authors.forename: Dina
authors.initials: D
authors.lastname: LoGiudice
authors.forename: Karen A
authors.initials: KA
authors.lastname: Sullivan
authors.forename: Stephen
authors.initials: S
authors.lastname: Macfarlane
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000188:drug therapy*; D001294:Attitude to Health; D017028:Caregivers / Q000193:education / Q000523:psychology*; D002986:Clinical Trials as Topic / Q000592:standards*; D005190:Family / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006379:Helping Behavior; D006801:Humans; D008297:Male; D009042:Motivation; D018579:Patient Selection; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014739:Victoria