Characteristics of Advance Care Planning Interventions Across Dementia Stages: A Systematic Review

Abstract

Purpose: Little is known regarding how advance care planning (ACP) interventions change with the progression of dementia. Thus, the primary purpose of this systematic review is to compare characteristics of ACP interventions across dementia stages. We also identify the role of nurses in implementing ACP interventions for persons with dementia and their surrogates.

Design: A systematic review of ACP intervention studies.

Methods: After searching PubMed, Web of Science, EMBASE, PsycArticles, the Cumulative Index to Nursing and Allied Health Literture (CINAHL), and Scopus, the final sample included 11 studies representing 10 interventions. We conducted a quality assessment and extracted data on dementia stage, intervention characteristics, and the role of nurses in the intervention. The extracted data were categorized according to stages of dementia, and analyzed to identify commonalities and differences between intervention characteristics.

Findings: Three ACP interventions focused on mild dementia and seven on advanced dementia. We observed four primary findings. First, we found a major difference in intervention recipients between the two dementia stages. Second, most ACP interventions included structured discussions regarding the person's life goals and values, goals of care, and preferences concerning future care via individual, face-to-face interactions. Third, ACP interventions designed to promote ongoing discussions and documentation were lacking. Finally, nurses played important roles in implementing ACP interventions.

Conclusions: The findings suggest more nurse-led, dementia-related ACP interventions. In addition, ACP interventions should promote ongoing discussions and documentation and target persons with dementia and their surrogates in various countries.

Clinical relevance: Many persons with dementia and their surrogates have limited knowledge about ACP; thus, more nurse-led ACP programs that reflect dementia stages may help them prepare for the situations in which persons with dementia lack decision-making capacity.

Keywords: Advance care planning; dementia; intervention; palliative care.