title: Establishing the motivations of patients with dementia and cognitive impairment and their carers in joining a dementia research register (DemReg).
abstract: BACKGROUND
  Connecting willing patients with dementia to suitable clinical research studies has been historically challenging. The United Kingdom Dementia and Neurodegenerative Research Network (DeNDRoN) was established to link patients into high-quality studies. One component is DemReg, a register of dementia patients and their carers who have agreed to be approached regarding future research studies. The limited literature highlights the predominance of altruism mediating research register participation. The objective of this study was to understand the motivations of patients and carers to participate in DemReg.
  
  
  METHODS
  There were 107 participants in the study, interviewed using a questionnaire to determine which factors were important in their decision to be on the register. The study compared the proportion of the altruistic motivations articulated with the proportion of the other answers offered.
  
  
  RESULTS
  The two most important motivators for registering on DemReg were to help others (44%; p < 0.001) or themselves (29%; p < 0.001) and altruistic motives took precedence over those for personal benefit. Participants were not motivated by the prospect of payment or by concern that they would be letting down their clinician if they did not register.
  
  
  CONCLUSIONS
  There are currently major projects within the United Kingdom to increase the number of patients on dementia registers and to further involvement in dementia research. This study, to the best of our knowledge, is the first to assess the motivations of patients and carers for joining a dementia research register in the United Kingdom, and the findings highlight the importance of altruistic motives.
authors.affiliation: West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK.
authors.forename: Cerian
authors.initials: C
authors.lastname: Avent
authors.forename: Lisa
authors.initials: L
authors.lastname: Curry
authors.forename: Sarah
authors.initials: S
authors.lastname: Gregory
authors.forename: Sonia
authors.initials: S
authors.lastname: Marquardt
authors.forename: Lauren
authors.initials: L
authors.lastname: Pae
authors.forename: Danielle
authors.initials: D
authors.lastname: Wilson
authors.forename: Karen
authors.initials: K
authors.lastname: Ritchie
authors.forename: Craig W
authors.initials: CW
authors.lastname: Ritchie
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D000375:Aging; D000533:Altruism; D017028:Caregivers / Q000523:psychology*; D003072:Cognition Disorders / Q000523:psychology*; D003704:Dementia / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009042:Motivation; D018579:Patient Selection; D012042:Registries; D012106:Research; D011795:Surveys and Questionnaires; D006113:United Kingdom