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Protocol for the Rare Dementia Support Impact study: RDS Impact
Author(s) -
Brotherhood Emilie V.,
Stott Joshua,
Windle Gill,
Barker Suzie,
Culley Siobhan,
Harding Emma,
Camic Paul M.,
Caufield Maria,
Ezeofor Victory,
Hoare Zoe,
McKeeJackson Roberta,
Roberts Jennifer,
Sharp Rebecca,
SuarezGonzalez Aida,
Sullivan Mary Pat,
Tudor Edwards Rhian,
Walton Jill,
Waddington Claire,
Winrow Eira,
Crutch Sebastian J.
Publication year - 2020
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.5253
Subject(s) - dementia , thematic analysis , context (archaeology) , psychological intervention , cohort , gerontology , cohort study , psychology , medicine , data collection , randomized controlled trial , qualitative research , psychiatry , pathology , sociology , disease , paleontology , social science , biology
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): (a) longitudinal cohort interviews, (b) theoretical development, (c) developing measures, (d) novel interventions, and (e) 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 more than 1000 individuals will be invited to participate. The primary and secondary outcomes will be in part determined through a co‐design nominal groups technique prestudy involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on prespecified hypotheses. A variety of quantitative (eg, analysis of variance [ANOVA] and multiple linear regression techniques), qualitative (eg, thematic analysis [TA]), 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 commenced in January 2020. 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.