# Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review

## TL;DR

This paper reviews how to better support decision-making for people with dementia through advance care planning by understanding the needs of different stakeholders.

## Contribution

A scoping review identifying stakeholder-specific needs and challenges in implementing dementia-specific advance care planning and directives.

## Key findings

- Healthcare professionals require training and structured tools for effective dementia-specific ACP/AD.
- Early and ongoing engagement of people with dementia is crucial for meaningful decision-making.
- Shared decision-making becomes essential in late-stage dementia to align care with personal goals.

## Abstract

Advance care planning (ACP) and advance directives (AD) are tools for supporting person-centered decision-making. In dementia care, the progression of cognitive decline, complex family dynamics and variability in healthcare systems pose unique challenges to effective ACP/AD implementation for people with dementia (PWD).

We conducted a scoping review of the literature related to ACP/AD in dementia care between 2014 and 2024. Studies were screened and thematically analyzed to identify current approaches, gaps and recommendations for dementia-specific ACP/AD. We identified key stakeholders involved in decision-making and highlighted procedural components for ACP/AD according to stakeholder groups.

Forty studies were included. Key stakeholders included healthcare professionals (HCPs); family members and caregivers; PWD; dyads (PWD and their caregivers); the broader public; policymakers; and researchers. Prominent findings included: the role and training of HCPs; educational and decision-support needs; early and ongoing engagement of PWD; development and evaluation of dementia-specific tools; ethical and procedural challenges in end-of-life decision-making; and the importance of outreach and cultural sensitivity. Promising interventions include structured communication models, psychoeducational programs and tools, although few have been fully adapted for dementia.

Dementia-specific ACP/AD require a relational, flexible and ethically grounded approach that evolves with the individual’s condition. While ACP/AD should reflect the autonomous preferences of the PWD, during late-stage dementia, shared decision-making becomes central to providing care that aligns with the person’s goals and preferences. Future research should focus on inclusive tools and training; timing and process facilitation; and public health strategies to improve access and equity.

The online version contains supplementary material available at 10.1186/s12877-025-06514-3.