Navigating Advance Care Planning for Individuals With Young-Onset Dementia: A Systematic Review

Advance care planning (ACP) is a critical component of dementia care. Given the relatively rapid progression of young-onset dementia (YOD), which impairs cognitive abilities and decision-making capacity, it is especially vital to initiate ACP discussions early in the disease course for individuals with YOD. The aim of this review was to synthesize the existing literature on ACP for individuals with YOD.

A systematic review was conducted.

Individuals with YOD were involved in this review.

A systematic search was conducted in Web of Science MEDLINE, and PubMed in May 2025, yielding a total of 5080 articles. After removing 2803 duplicates, titles and abstracts were screened, followed by a full-text review of the articles that met the inclusion and exclusion criteria. Only peer-reviewed studies published in English before May 25, 2025, that focused on ACP for individuals with YOD were included in the review.

Through database and manual searches, 8 eligible studies were identified. The thematic analysis revealed 3 main themes: (1) factors influencing ACP engagement among individuals with YOD; (2) characteristics of ACP among individuals with YOD; and (3) preferences for and needs of ACP in YOD.

These findings contribute to a deeper understanding of the current application of ACP and offer insights into strategies for its enhancement. The review underscores the need for targeted strategies to improve ACP engagement in individuals with YOD and provides implications for clinical practice and future research.