AGMR

Objectives: This review aims to explore the appropriate timing of ACP discussions for individuals with advanced dementia and their surrogates, and the barriers and facilitators of ACP in this population. Design: A search was conducted on MEDLINE (Ovid), PsycINFO, and CINAHL Ultimate of relevant peer-reviewed research articles up to 13 June 2023. Key words were searched for advance care planning, timing, dementia OR Alzheimer Disease, family surrogate OR member, healthcare worker OR professional, barrier OR facilitator. The authors evaluated the study quality using a pre-agreed checklist of criteria. Relevant article contents were processed via NVivo software to identify the codes, sub-themes, and themes. Results: 6/42 papers meeting the pre-determined criteria were included from the search. 2 papers identified through other sources were included. A total of 8 papers were included in this review. Primary findings included supportive communication, education interventions, addressing barriers, and utilizing facilitators as important in enhancing the ACP process. The support of healthcare teams to family surrogates in ACP was crucial for improving the quality of dying for individuals with advanced dementia. Conclusions: Factors affecting the appropriate timing of ACP discussion with people with dementia (PWD) and family include care team taking the initiative to facilitate ACP, early discussions routinely, and updating it periodically. Avoidance, competing priority with current crises and problems, difficulty in accepting future deterioration and challenging to think about death, lacking knowledge on ACP and treatments, feeling as if giving up on PWD in refusing treatment are some ACP barriers. ACP facilitators include PWD and families’ acceptance of the disease trajectory and willingness to address end of life, viewing ACP as support for surrogates for future care decision, education to improve understanding of the disease trajectory, and comfort care to guide decision making, and care team seeing it as a priority.

advance care planning; advanced dementia; family surrogates; timing; barriers