A Systematic Review of Palliative Care Needs in Young-Onset Dementia

Abstract

Background: The distinctive differences in clinical needs and disease trajectory between people with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area.

Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD.

Results: Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and people with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. People with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low.

Conclusions: Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care.

Keywords: Advance care planning; late-onset dementia; palliative care; young-onset dementia.