Background

Substitute decision makers are important for people with advanced dementia, particularly at the end of life. Substitute decision makers report issues in providing support, and physical and psychological consequences from the role. However, there is no synthesised evidence about how substitute decision makers are affected by and experience making decisions for older persons diagnosed with dementia at end of life.

Methodology: A protocol for a qualitative systematic review was developed. Seven articles met both inclusion and research quality criteria following a comprehensive search for published and unpublished studies (January 2007–2017, English language). Meta-synthesis was achieved through meta-aggregation of the results from included studies.

Results

Meta-aggregation of 20 themes into eight categories resulted in five synthesised findings. The findings were: ‘trust’; ‘guilt, mistrust and confusion’; ‘translating quality of life’; ‘negotiating families’; and ‘uncertainty and reactivity’. Trust in healthcare personnel positively affected substitute decision makers and supported their adaptability. Substitute decision makers experienced guilt, mistrust, and confusion as they encountered increased complexity in care and health interventions as social needs changed. Substitute decision makers experienced complexities and struggles as they interpreted quality of life and negotiated end of life treatment decisions. Substitute decision makers experienced practical needs to negotiate family as they fulfilled their support roles. Ambiguity in advance care plans, limited knowledge of dementia, end of life uncertainties, and communication issues reduced substitute decision makers’ proactivity.

Implications: Being a substitute decision maker for people with advanced dementia at end of life is stressful. Health professionals need to be cognizant of substitute decision makers experiences and needs, and identify mechanisms to achieve support and education. The findings generate need for further investigation of interventions to meet the needs of substitute decision makers.