Recruitment into dementia studies: Experiences of researchers using the Join Dementia Research register

2021 ◽  
Author(s):  
Maria Karagiannidou ◽  
Madeleine Stevens ◽  
Martin Knapp ◽  
Eva Cyhlarova
Keyword(s):  
Research Register ◽  
Dementia Research

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

2013 ◽  
Vol 25 (6) ◽  
pp. 963-971 ◽  
Author(s):  
Cerian Avent ◽  
Lisa Curry ◽  
Sarah Gregory ◽  
Sonia Marquardt ◽  
Lauren Pae ◽  
...  
Keyword(s):  
United Kingdom ◽  
Research Network ◽  
Future Research ◽  
Personal Benefit ◽  
The United Kingdom ◽  
Research Register ◽  
Dementia Patients ◽  
Number Of Patients ◽  
Dementia Research ◽  
Research Studies

ABSTRACTBackground: 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.

CEU Introduction: What's New in Dementia Research?

2005 ◽  
Vol 10 (2) ◽  
pp. 2-2
Author(s):  
Constance Dean Qualls
Keyword(s):  
Dementia Research

Scottish Research Register 2002

2003 ◽  
Vol 14 (1) ◽  
pp. 159-162
Author(s):  
Siobhan McConnachie
Keyword(s):  
Research Register

Scottish Research Register 2006

2007 ◽  
Vol 18 (1) ◽  
pp. 187-192
Author(s):  
Hannah Garrow
Keyword(s):  
Research Register

scholarly journals Conference Scene: Current dementia research in Australia: a report from the Alzheimer’s Australia 15th National Conference

2013 ◽  
Vol 3 (4) ◽  
pp. 317-320
Author(s):  
Elizabeth Beattie ◽  
Elaine Fielding ◽  
Maria O’’Reilly ◽  
Fred Graham ◽  
Christine Neville
Keyword(s):  
National Conference ◽  
Dementia Research

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

Interview for Deterioration in Daily Living Activities in Dementia: construct and concurrent validity in patients with mild to moderate dementia

2011 ◽  
Vol 24 (3) ◽  
pp. 382-390 ◽  
Author(s):  
Sebastian Voigt-Radloff ◽  
Rainer Leonhart ◽  
Matthias Schützwohl ◽  
Luisa Jurjanz ◽  
Thomas Reuster ◽  
...  
Keyword(s):  
Activities Of Daily Living ◽  
Internal Consistency ◽  
Concurrent Validity ◽  
Daily Living ◽  
Factor Model ◽  
Cognitive Testing ◽  
Daily Living Activities ◽  
Moderate Dementia ◽  
Dementia Research ◽  
And Performance

ABSTRACTBackground: The purpose of the study was to translate the Interview for Deterioration in Daily Living Activities in Dementia (IDDD) into German and to evaluate the construct and concurrent validity in people with mild to moderate dementia.Methods: IDDD data of two pooled samples (n = 301) were analyzed regarding ceiling and bottom effects, internal consistency, factor reliability and correlations with corresponding scales on cognition and activities of daily living.Results: We found minimal bottom (< 5%) and ceiling (≤ 2%) effects, good internal consistency (Cronbach's α > 0.7) and moderate to good factor reliability (0.66–0.87). Low correlations with cognition (Pearson coefficient: < 0.17) confirmed the differences between cognitive testing and activities of daily living (ADL). Minor correlations with other ADL scores (r < 0.2) indicated that different scores cover a different range of ADLs. The original two factor model could not be confirmed. A suggested four factor model distinguishing initiative and performance of basic and instrumental ADL demonstrated better indices of fit and higher correlations with corresponding scales.Conclusion: A four factor model of the IDDD can be used in dementia research for assessing initiative in and performance of basic and household activities of daily living. The findings suggest that ADL scales correlate only poorly and that further development of the IDDD is needed to cover a broader range of ADLs.

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