Non-pharmaceutical interventions for persons living with young-onset dementia and their informal caregivers: a systematic review with meta-analysis

To investigate the effects of non-pharmaceutical interventions for persons living with young-onset dementia (YOD) including frontotemporal dementia and their informal caregivers, we conducted a systematic review including randomized and non-randomized controlled trials. We searched bibliographic databases and performed citation and web searches. We found nine trials assessing interventions on education and information or support and counselling that were published between 1990 and 2024 (median sample size: 58). Meta-analyses revealed no statistically significant impact on behavioral outcomes, activities of daily living and quality of life of persons living with YOD and no statistically significant impact on burden, depression and anxiety, and quality of life of informal caregivers. Evidence on the effectiveness of non-pharmaceutical interventions for persons living with YOD and their informal caregivers is limited and inconsistent. Further, larger, and multiple randomized controlled trials assessing the impact of non-pharmaceutical interventions with comparable outcomes, standardized measurements, and longer follow-ups are needed. HIGHLIGHTS- Young-onset dementia (YOD) including frontotemporal dementia (FTD) is challenging for individuals and families. - For education and information interventions, there was no statistically significant impact on behavioral outcomes (SMD -0.18, 95% CI -0.67; 0.31), activities of daily living (SMD 0.05, 95% CI -0.45; 0.54) and quality of live (MD -8.93, 95% CI -30.73; 12.86) of persons living with YOD. - For support and counselling interventions, there was no statistically significant impact on burden (SMD -0.09, 95% CI -0.66; 0.47), depression and anxiety (SMD -0.20, 95% CI -0.66; 0.25), and quality of live (SMD -0.56, 95% CI -2.12; 1.00) of informal caregivers.