BELIDE: Better Living With Non-memory-led Dementia - Trial NCT06241287

Timeline & Enrollment

Primary Outcome

Patient Health Questionnaire (PHQ 9)

Summary

Around 48 million people worldwide 1 live with dementia, of whom 3.9 million start with
 symptoms before the age of 65 (young-onset dementia). Most of the people presenting with
 young-onset dementia and some people with later onset dementia develop non-memory led
 dementias such as the atypical forms of Alzheimer ́s disease (AD)or frontotemporal dementia
 (FTD). Despite the proven benefits of educational programmes and skill training for
 caregivers, families of people with non-memory led dementias encounter fewer opportunities to
 receive this type of support. This is a significant gap in care considering that many people
 with young-onset non-memory led dementia are in their 50s or early 60s, which carries
 additional challenges about employment, financial stability, and childcare responsibilities.
 Finding suitable information and resources is less likely due to the lower prevalence of
 these phenotypes, their consequent geographical spread, and their atypical symptoms.
 Caregivers demands for more phenotype-specific support suggest that tailored provision of
 education and training is a gap in the provision of care in these types of dementia.
 
 The aim of this study is to:
 
 1. Determine the effectiveness of the Better Living with Non-memory Dementia educational
 programme for caregivers in improving psychological outcomes [WS1]; and
 
 2. Conduct a mixed methods process analysis to elucidate mechanisms of change, barriers and
 facilitators to access and implementation as well as perceived benefits and costs [WS2].
 
 The design is a randomised waiting list control trial with an 8-week intervention and 6-month
 follow-up comparing intervention to standard care with embedded process analysis. The
 intervention comprises a virtual onboarding session with a facilitator, 6 learning modules
 (including module-end real-life tasks to put skills into practice) and up to two further
 virtual check-in sessions with the facilitator. Intervention adaptation, adaptation to design
 and selection of primary outcome measures was based on feasibility work.

ICD-10 Classifications