Protocol for the Rare Dementia Support Impact Study: RDS Impact

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  • Emilie Brotherhood
    University College London
  • Joshua Stott
    University College London
  • Gill Windle
  • Suzie Barker
    University College London
  • Siobhan Culley
    University College London
  • Emma Harding
    University College London
  • Paul M Camic
    University College London
  • Maria Caulfield
  • Victory Ezeofor
  • Zoe Hoare
  • Roberta McKee-Jackson
    University College London
  • Jen Roberts
  • Rebecca Sharp
  • Aida Suarez-Gonzalez
    University College London
  • Mary Pat Sullivan
    Nipissing University
  • Rhiannon Tudor Edwards
  • Jill Walton
    University College London
  • Claire Waddington
    University College London
  • Eira Winrow
  • Sebastian J. Crutch
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.


  • Dementia, young-onset dementia, dementia support groups, rare dementia support
Original languageEnglish
Pages (from-to)833-841
Number of pages9
JournalInternational Journal of Geriatric Psychiatry
Issue number8
Early online date25 Dec 2019
Publication statusPublished - Aug 2020

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