Objective:

To review and synthesize the evidence base on advanced care planning (ACP) in populations affected by neurodegenerative disease, with a focus on identifying themes, gaps, and opportunities for further research.

Background:

Patients with neurodegenerative diseases can experience a progressive decline in cognition and function. To help protect patient autonomy and support future medical decision-making, there is a need for early integration of ACP in this population. 

Design/Methods:

We reviewed the literature published between January 2000 and June 2025. Embase, PubMed, and Medline were searched for articles using keywords relating to ACP and neurodegenerative diseases. Articles that met inclusion criteria were read and key findings were noted for each article reviewed, which helped to facilitate the organization and integration of common themes.

Results:

Research in this field has rapidly grown in recent years. 186 articles met inclusion criteria: 68% focused on patients with dementia/cognitive impairment, 11% motor neurone disease, 10% Parkinson’s disease or atypical parkinsonism, and 11% other. Articles were classified by their primary research aim into one of the following categories: Measuring rates of ACP or factors associated with ACP completion (15%), evaluating stakeholder perspectives of ACP (41%), studying methods of implementing ACP (32%), and measuring outcomes associated with ACP (10%). There were key differences in the ACP approaches across conditions.

Conclusions:

The importance of ACP is widely recognized, however a complex interplay of factors shape one’s readiness to engage in ACP. Opinions differ regarding when and by whom ACP should be initiated, especially in populations where there is greater clinical variability and prognostic uncertainty. Furthermore, ACP practices vary across different conditions. In MND, ACP is typically supported by streamlined multidisciplinary clinics with palliative care specialists; however, further research is needed to determine how best to implement ACP in those with neurodegenerative conditions cared for in the primary care or general neurology settings.