Barriers to Advance Care Planning in Older Adults With Dementia, Their Families and Healthcare Professionals: An Umbrella Review of Qualitative Evidence

Res Aging. 2024 May-Jun;46(5-6):339-358. doi: 10.1177/01640275241227909. Epub 2024 Jan 19.

Abstract

This umbrella review aimed to examine and synthesize qualitative studies that explored the barriers and facilitators of advance care planning for persons with dementia, their families, and their healthcare professionals and caregivers. The modified umbrella review approach developed by the Joanna Briggs Institute was followed. Five major English databases were searched. Four reviews based on 38 primary qualitative studies were included. The methodological quality of the included reviews was moderate to high. The synthesis yielded 16 descriptive themes and five analytical themes: making the wishes/preferences of persons with dementia visible; constructive collaboration based on stakeholders having positive relationships; emotional chaos in facing end-of-life substitute decision-making; initiating the advance care planning process; and preparedness and commitment of healthcare providers to advance care planning. Comprehensive and workable strategies are required to overcome complex and interrelated barriers involving not only healthcare professionals but also organizational and systemic challenges.

Keywords: advance care planning; advance directives; dementia; thematic synthesis; umbrella review.