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Establishing the motivations of patients with dementia and cognitive impairment and their carers in joining a dementia research register (DemReg)

Published online by Cambridge University Press:  19 March 2013

Cerian Avent ,
Lisa Curry ,
Sarah Gregory ,
Sonia Marquardt ,
Lauren Pae ,
Danielle Wilson ,
Karen Ritchie  and
Craig W. Ritchie
Cerian Avent
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK
Lisa Curry
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK Imperial College London, London, UK
Sarah Gregory
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK
Sonia Marquardt
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK
Lauren Pae
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK Imperial College London, London, UK
Danielle Wilson
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK Imperial College London, London, UK
Karen Ritchie
Affiliation:
Imperial College London, London, UK INSERM Unit 1061: Neuropsychiatry, Montpellier, France
Craig W. Ritchie*
Affiliation:
West London Cognitive Disorders Treatment and Research Unit, West London Mental Health Trust, London, UK Imperial College London, London, UK
*
Correspondence should be addressed to: Craig W. Ritchie, Brentford Lodge, Boston Manor Road, Brentford, UK, TW8 8DS. Phone: +44-2084831800; Fax: +44-2084831838. Email: c.ritchie@imperial.ac.uk.
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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.

Keywords

aged careagingcognitive disordersmemorymemory clinics
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 6 , June 2013 , pp. 963 - 971
Copyright
Copyright © International Psychogeriatric Association 2013

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