Forskningsartikler

Abstract

INTRODUCTION: The Cambridge Cognitive Examination modified for use in peo[1]ple with Down syndrome (CAMCOG-DS) is a sensitive cognitive test for Alzheimer’s disease (AD)–related decline in people with DS, but needs updates for sensitivity, cul[1]tural adaptability, and additional memory/executive function items. This study aimed to develop and validate the CAMCOG-DS-II.

METHODS: In this multi-language, multi-site study, the psychometric properties of the CAMCOG-DS-II were evaluated against previously validated measures in 223 participants (mean age: 40.18 years) with DS across seven countries.

RESULTS: The CAMCOG-DS-II had a high completion rate, minimal floor/ceiling effects (compared to the modified Cued Recall Test, the CANTAB Paired Associates Learning, and the Purdue Pegboard), strong validity and reliability, and performance was unaf[1]fected by language across sites. It differentiated between those with/without AD and distinguished clinically rated cognitively stable and prodromal individuals.

CONCLUSION: The CAMCOG-DS-II is a sensitive measure of cognitive performance in people with DS at risk of AD. Its cross-language and site reliability support its potential use in AD–DS clinical trials.

Phoebe Ivain, Asaad Baksh, Fedal Saini, Mina Idris, Miren Tamayo-Elizalde, Jasmine Wells, Bessy Benejam, Sandra Virginia Loosli, Katja Sandkühler, Elisabeth Wlasich, Olivia Wagemann, Johannes Levin, Diane Martet, Silvia Sacco, Ségolène Falquero, Manon Clert, Anne-Sophie Rebillat, Wan Ming Khoo, Madelaine Amelia Smith, Jessica Beresford-Webb, Shahid Zaman, María Carmona-Iragui, Laura Videla, Juan Fortea, Ellen Melbye Langballe, Ingrid Tøndel Medbøen, Frode Kibsgaard Larsen, Eleni Baldimtsi, Raphaella Paradisi, Panagiotis Ntailakis, Magdalini Tsolaki, Georgia Papantoniou, Eimear McGlinchey, Mary McCarron, Seán Kennelly & André Strydom

Abstract:
Introduction: We investigated the effectiveness of the multicomponent learning, innovation, volunteer support, empowerment (LIVE) intervention on caregiver burden and care time in dyads of home-dwelling people with dementia and caregivers.

Method: A 24 month, multicenter, stepped-wedge trial, randomized dyads to receive the 6-month LIVE intervention by municipal coordinators (May 2019 to December 2021). Primary outcomes were caregiver burden assessed by Relative Stress Scale (RSS) and informal care time spent on personal activities assessed by Resource Utilization in Dementia Personal Activities of Daily Living (RUD-PADL). Analyses used an intention-to-treat.

Results: Two hundred eighty dyads were enrolled. Caregivers during the intervention period reported lower levels of RSS of 0.7 points (standard deviation [SD]: 0.8) compared to the caregivers in the control period. Caregivers during the intervention period reported more time spent on PADL of 11.7 hours/month (SD: 8.7) compared to caregivers during the control period; both were not statistically significant (P > 0.05).

Discussion: The LIVE intervention did not reduce caregiver burden or care time.

Trial registration: ClinicalTrials.gov NCT04043364.

Highlights: Two hundred eighty persons with dementia and caregivers were included in a stepped wedge randomized controlled trial. We used the learning, innovation, volunteer support, empowerment (LIVE) intervention. The LIVE intervention did not reduce caregiver burden or informal care time. The LIVE intervention improved the caregiver’s clinical global impression of change. Positive change was most pronounced for coordinator personalized support.

Line Iden Berge, Renira Corinne Angeles, Marie Hidle Gedde, Stein Erik Fæø, Janne Mannseth, Maarja Vislapuu, Natalie Genevieve Søyland Puaschitz, Eirin Hillestad, Dag Aarsland, Wilco Peter Achterberg, Heather Allore, Clive Ballard, Fan Li, Geir Selbæk, Ipsit Vihang Vahia & Bettina Sandgate Husebo