P3-616: longitudinal profiles of quality of life in young-onset dementia

Young-onset dementia (YoD) refers to dementia diagnosed before the age of 65. Quality of life (QoL) in YoD is poorly studied, yet existing research suggests it may be a useful outcome measure in assessing how well post-diagnostic care is provided, and an indicator of patients in greater need of support. The aim was to investigate changes in QoL in YoD patients and caregivers over time, and better understand the behavioural and functional factors that may influence QoL. This was a longitudinal prospective cohort study. Data was collected from 50 participants (25 YoD patients, 25 caregivers) at 6-monthly intervals. Participants completed questionnaires measuring QoL and other influential behavioural and functional measures. Primary outcome measures focused on multi-dimensional QoL variables and included: dementia specific QoL (QoL-AD), generic QoL (WHOQoLBREF), health-related QoL (EQ5D) and a single item QoL instrument. Secondary outcome measures included mental health (HADS), caregiver burden (ZBI), dementia severity (CDR), and cognitive and behavioural dementia symptoms (CBI). Patients tended to self-report their QoL as higher than caregiver proxy ratings, and caregivers rated their own QoL as being lower than patient self-reports. QoL appears to remain stable in patients and caregivers over time, and is not related to disease severity. Secondary outcomes such as depression, anxiety and burden appear stable over time in caregivers, but there is individual variation. There appears to be a gradual rise in anxiety levels in patients. QoL in YoD and its secondary variables are characterized by stability over 2 years. This may relate to the slow rate of disease progression, or may reflect longer-term stability of QoL irrespective of disease change. There may be benefit in identifying those in whom QoL declines significantly for targeted intervention. Sensitivity of QoL instruments to change may be an issue, and future research should consider using more YoD-specific measures.