The course of neuropsychiatric symptoms in institutionalized patients with young onset dementia

Objectives: Young onset dementia (YOD) often comes with neuropsychiatric symptoms (NPS) that are burdening for patients and caregivers and are predictors for institutionalization. The course of NPS in institutionalized patients with YOD is unknown. This study aims to fill this gap.Method: This study is part of the BEYOND-study, a descriptive longitudinal cohort study of institutionalized YOD patients. Eighty-nine patients were included in this two-year follow-up study, of which 50 completed the whole follow-up. Clinically relevant NPS were assessed using the Neuropsychiatric Inventory-Nursing Home version with a threshold of FxS ≥4. Mean scores and prevalence were calculated of all patients alive at the moment of a given assessment. Cumulative percentages were calculated in patients with complete follow-up.Results: 82-94% of the residents had at least one NPS at any of the five assessments. Over the two year course, 94% of the patients developed at least one new symptom of which 58% developed irritability, 52% agitation, 44% disinhibition and 44% eating change. All patients had any NPS during follow-up. Apathy had the highest overall prevalence rate and was the most persistent symptom over the two-year course, followed by eating changes, aberrant motor behaviour and irritability. The course during follow-up was variable for all NPS with no clear increase or decrease.Conclusion: The severity and prevalence of NPS in institutionalized YOD patients fluctuated during follow-up. Apathy and hyperactive symptoms were most severe and persistent. Future research should focus on the influence of psychotropic drug use and dementia subtype on the course of NPS.