Forskningsartikler

Abstract

Background: With the anticipated increase in dementia prevalence over the coming decade, understanding the experience of receiving a dementia diagnosis for people living with cognitive impairment remains limited. This study aims to explore the implications of a family member with cognitive impairment receiving a dementia diagnosis or not from the perspective of their next of kin.

Methods: A qualitative descriptive design was applied using individual interviews for data collection. Participants were recruited based on the cognitive function level of their family members, which was compatible with dementia as assessed with the Montreal Cognitive Assessment Scale (MoCA). The sample consisted of eight participants, comprising family members of five individuals with confirmed dementia diagnoses and three undiagnosed. The analysis was performed using four steps of systematic text condensation to discern codes, categories, and the overarching theme.

Results: Three main categories were created: (1) Impact of observed cognitive decline, (2) Impact of diagnosis on service engagement, and (3) Support and follow-up for family caregivers. The findings show that next of kin who have received a dementia diagnosis for their family members are more proactive in seeking help and services, are better informed about available resources, and are more concerned about future challenges. On the other hand, next of kin to family members without a diagnosis are more inclined to handle the situation on their own, have less access to information and services, and generally express less concern about future problems.

Conclusion: The study reveals the benefits of receiving a timely dementia diagnosis in shaping more effective support systems and policies. This ensures that the next of kin and the person with cognitive impairment can navigate the complexities of dementia with greater confidence and preparedness, thereby enhancing their quality of life.

Inger Molvik, Grete Kjelvik, Geir Selbæk & Anne Marie Mork Rokstad

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