A Novel Tool to Assess the Capacity of People with Dementia to Designate a Surrogate

Background and Objectives As their cognitive function declines, people with dementia often lose decision-making capacity (DMC) for choosing certain medical treatments, but some retain the capacity to designate a surrogate decision maker. There is currently no tool for assessing the capacity to designate a surrogate (CDS). The purpose of this study is to validate a novel capacity assessment tool for evaluating CDS for people with a clinical diagnosis of dementia. Research Design and Methods A concurrent mixed-methods design was used to evaluate 52 participants’ ability to (1) consistently name a surrogate, (2) understand the role of the surrogate, and (3) provide a rationale for why they chose their surrogate. A basic difference of means was used to test differences in CDS scores between participants who had and did not have DMC. Thematic analysis was applied to the narrative data on reasons for the participants’ choice of surrogate. Results The CDS instrument demonstrated high interrater reliability and evidence of validity. On every dimension, the CDS tool identified participants who otherwise lacked DMC who nonetheless had full understanding of the need, process, and role of a surrogate. Thematic analysis revealed thirty-three unique reasons participants chose their surrogate, which were then grouped into three overarching themes. Discussion and Implications The CDS tool shows that there are patients who may otherwise lack DMC but who can validly designate a surrogate. The CDS tool may be a highly useful instrument to promote patient-centered care among vulnerable patients deemed to lack capacity for treatment decisions.