A qualitative exploration of proxy decision makers’ expectations of prescribed medications for people with advanced dementia

Background: Proxy decision-makers often have to make decisions for people with advanced dementia. Their expectations regarding prescribed medications have the potential to influence prescription or withdrawal of medications. However, few studies to date have explored this.

Aim: To explore proxy decision-makers’ expectations of prescribed medications for people with advanced dementia, and to consider how these change with changing goals of care and dementia progression.

Design: Qualitative semi-structured interview study.

Setting/participants: Fifteen proxy decision-makers of people with advanced dementia were recruited via general practitioners (n=9), Join Dementia Research (JDR) (n=3), and the Alzheimer’s Society Northern Ireland (n=3).

Results: Five key themes emerged: the role as advocate; attitudes to medicines and medicine taking; uncertainty over the benefit of anti-dementia medications; stopping medications; and communication and decision-making. Proxy decision-makers desired more information about prescribed medicines, particularly the indications, benefits and risks of treatment. Despite uncertainty about the benefits of anti-dementia medications, proxy decision-makers were reluctant for these medications to be withdrawn. Reluctance to stop other prescribed medicines was also expressed, but reduced with changing goals of care and dementia progression. Although some proxy decision-makers expected to be involved in medication-related decisions, the majority preferred to delegate these decisions to healthcare professionals. However, they expected to be informed of any medication-related decisions made.

Conclusions: Proxy decision-makers vary in terms of their desire for active involvement in the medication decision-making process. Healthcare professionals should facilitate proxy decision-maker involvement if desired. Further research is required to consider the impact of proxy decision-maker involvement in decision-making.