Advance care planning in people with early cognitive impairment

People with early cognitive impairment (ECI), comprising mild cognitive impairment and early dementia face the risk of diminished mental capacity with progressive disease. Advance care planning (ACP) is advocated as a means to uphold the autonomy of individuals and enable them to express their wishes for the future while they still possess mental capacity. This study aims to explore the perspectives of patients with ECI regarding ACP, and in particular, understand their reasons for resistance.

Consecutive patients undergoing a counselling service for persons with ECI who fulfilled inclusion criteria (Mini Mental State Examination score ≥18, Global Clinical Dementia Rating (GCDR)=0.5 or 1 were recruited. Demographic and clinical data was collected and the detailed documentation in the case records of the counselling sessions was subjected to a thematic analysis. Differences between patients who were willing to engage in ACP and those who declined were also analysed.

93 patients (mean age 76, 60.2% female) were recruited of which 38.7% chose to engage further in ACP discussions. GCDR was the only factor that emerged significant on bivariate analysis for willingness to engage in ACP (t (79)=2.191, p<0.05, two-tailed) whereby milder CI was associated with a greater likelihood of ACP engagement. Among those who declined ACP, three main themes emerged from the thematic analysis. The majority deferred decision-making to their families. Some perceived ACP as irrelevant or unnecessary, and displayed avoidance and denial during ACP discussions.

A large proportion of patients with ECI decline ACP discussions and the reasons are influenced by personal values, coping behaviours and sociocultural norms. These findings have important implications for practice.