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Protocol for the Rare Dementia Support Impact Study: RDS Impact

Brotherhood, EV; Stott, J; Windle, G; Barker, S; Culley, S; Harding, E; Camic, PM; ... Crutch, SJ; + view all (2020) Protocol for the Rare Dementia Support Impact Study: RDS Impact. International Journal of Geriatric Psychiatry 10.1002/gps.5253. (In press). Green open access

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Abstract

OBJECTIVES: The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dementia, comprising the following five Work Packages (WPs): (1) Longitudinal cohort interviews; (2) Theoretical development; (3) Developing measures; (4) Novel interventions; and (5) Economic analysis. METHODS: This is a mixed-methods design, including a longitudinal cohort study (quantitative and qualitative) and a feasibility randomised control trial (RCT). A cohort of >1000 individuals will be invited to participate. The primary and secondary outcomes will be in-part determined through a co-design Nominal Groups Technique pre-study involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on pre-specified hypotheses. A variety of quantitative (e.g. ANOVA and multiple linear regression techniques), qualitative (e.g. thematic analysis) and innovative analytical methods will also be developed and applied by involving the arts as a research method. RESULTS: The UCL Research Ethics Committee have approved this study. Data collection will begin in Q4 2019. CONCLUSIONS: The study will capture information through a combination of longitudinal interviews, questionnaires and scales, and novel creative data collection methods. The notion of 'impact' in the context of support for rare dementias will involve theoretical development, novel measures and methods of support interventions, and health economic analyses.

Type: Article
Title: Protocol for the Rare Dementia Support Impact Study: RDS Impact
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/gps.5253
Publisher version: https://doi.org/10.1002/gps.5253
Language: English
Additional information: This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Keywords: Dementia, Dementia support groups, Rare Dementia Support, Young-onset dementia
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases
URI: https://discovery.ucl.ac.uk/id/eprint/10088832
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