Quality of life of persons with young-onset dementia: Repeated self-reported assessment over two years from diagnosis

BackgroundTo provide adequate support for persons with young-onset dementia (YOD) at the optimal time point, we need to know how their quality of life (QoL) changes over time.ObjectiveThe aim was to describe trajectories in self-reported QoL and health related QoL (HRQoL) scores over a period of two years in persons recently diagnosed with YOD, and to explore the feasibility of repeated longitudinal QoL assessments.MethodsThe study has a longitudinal explorative design. Persons with YOD (n = 33) were recruited at time of diagnosis and asked to complete a questionnaire including QoL-AD and RAND-36, every six months for two years. Questionnaire data were analyzed using Wilcoxon signed-rank tests. Differences between "completers" and "non-completers" were assessed using the independent-samples Mann-Whitney U tests or Pearson's Chi-square tests. Trajectories were visually explored by plotting individual and group scores over time.ResultsOver time, we found significant differences in the RAND-36 domain "energy/fatigue", with higher scores reported at 12 months (p = 0.047) and 24 months (p = 0.026) compared to shortly after diagnosis. Scatterplots of individual trajectories showed great variation in scores, without any clear patterns. The difference at baseline between the "non-completers" and the "completers" was that more participants in the "completers" group also participated in a yearly interview study.ConclusionsThe study highlights that even if QoL or HRQoL seems to be stable over time at group level, individual trajectories may show great variation. Research is needed to evaluate sensitive and clinically relevant QoL instruments for persons with YOD.