Hostname: page-component-cb9f654ff-p5m67 Total loading time: 0 Render date: 2025-08-08T16:15:54.628Z Has data issue: false hasContentIssue false
  • English
  • Français

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.
Get access

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

Information

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

Alzheimer's Society (2012). Dementia 2012: A National Challenge. London: Alzheimer's Society.Google Scholar
Cameron, D. (2012). Prime Minister's speech to the Dementia 2012 conference. www.number10.gov.uk; last accessed 1 June 2012Google Scholar
Connell, C. M., Shaw, B. A., Holmes, S. B. and Foster, N. L. (2001). Caregivers’ attitudes toward their family members’ participation in Alzheimer disease research: implications for recruitment and retention. Alzheimer Disease and Associated Disorders, 15, 137–145.CrossRefGoogle ScholarPubMed
Elad, P.et al. (2000). Demented patients’ participation in a clinical trial: factors affecting the caregivers’ decision. International Journal of Geriatric Psychiatry, 15, 325–330.3.0.CO;2-9>CrossRefGoogle Scholar
Iliffe, S.et al. (2011). Developing a dementia research registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programme. BMC Medical Research Methodology, 11, Article 9.CrossRefGoogle Scholar
Jefferson, A. L., Lambe, S., Chaisson, C., Palmisano, J., Horvath, K. J. and Karlawish, J. (2011). Clinical research participation among aging adults enrolled in an Alzheimer's disease center research registry. Journal of Alzheimer's Disease, 23, 443–452.CrossRefGoogle Scholar
Karlawish, J. H., Casarett, D. J. and James, B. D. (2002). Alzheimer's disease patients’ and caregivers’ capacity, competency, and reasons to enrol in an early-phase Alzheimer's disease clinical trial. Journal of the American Geriatrics Society, 50, 2019–2024.CrossRefGoogle Scholar
Karlawish, J. H., Casarett, D., Klocinski, J. and Sankar, P. (2001). How do AD patients and their caregivers decide whether to enrol in a clinical trial? Neurology, 56, 789–792.CrossRefGoogle Scholar
Madsen, S. M., Holm, S., Davidsen, B., Munkholm, P., Schlichting, P. and Riis, P. (2000). Ethical aspects of clinical trials: the attitudes of participants in two non-cancer trials. Journal of Internal Medicine, 248, 463–474.Google ScholarPubMed
Marcantonio, E. R.et al. (2008). Maximizing clinical research participation in vulnerable older persons: identification of barriers and motivators. Journal of the American Geriatrics Society, 56, 1522–1527.CrossRefGoogle ScholarPubMed
Mastwyk, M., Macfarlane, S., LoGiudice, D. and Sullivan, K. A. (2003). Why participate in an Alzheimer's disease clinical trial? Is it of benefit to carers and patients? International Psychogeriatrics, 15, 149–156.CrossRefGoogle Scholar
Ministerial Advisory Group on Dementia Research (2011). The Ministerial Advisory Group on Dementia Research: Headline Report. London: Department of Health.Google Scholar
Sugarman, J., Cain, C., Wallace, R. and Welsh-Bohmer, K. A. (2001). How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society, 49, 1110–1119.CrossRefGoogle ScholarPubMed
Warburton, J. and Dyer, M. (2004). Older volunteers participating in a university research registry: helping others my age. Educational Gerontology, 30, 367–381.CrossRefGoogle Scholar
Supplementary material: File

Avent supplementary material

Avent supplementary material

Download Avent supplementary material(File)
File 30.3 KB