Engaging in the Life-planning in Early Alzheimer's and other Dementias advance care planning intervention is associated with perceived advance care planning concordance and interpersonal connectedness.

Abstract

Background and objectives: Persons living with dementia often rely upon a care partner as their surrogate medical decision maker, yet little is known about how dementia care dyads achieve advance care planning (ACP) concordance: when a care partner fully understands a care recipient's values and preferences as best they can. Examining data from a pilot study of the online Life-planning in Early Alzheimer's and other Dementias (LEAD) intervention to better understand how dyads achieve perceived ACP concordance, we hypothesized that: (1) engaging in ACP was associated with perceived ACP concordance, (2) perceived ACP concordance was associated with interpersonal connectedness, and (3) engaging in ACP was associated with interpersonal connectedness.

Research design and methods: Dyads completed the LEAD intervention and answered open-ended survey questions. After aggregating data supporting and or not supporting each hypothesis, process codes and subcodes were used to identify the elements involved in each supported hypothesis (Cohen's Kappa .65-.82).

Results: N = 48 community-based dyads completed the LEAD intervention, with N = 43 answering open-ended questions. Care recipients averaged 65.1 years of age (SD =14.8); care partners averaged 54.9 years (SD = 14.6) and were primarily spouses (n = 32, 66.7%) or children (n = 12, 25.0%). Engaging in ACP was associated with higher interpersonal connectedness and with perceived ACP concordance. Perceived ACP concordance was not associated with higher interpersonal connectedness.

Discussion and implications: These findings suggest that clinicians should focus on facilitating ACP discussions with dyads, as these conversations appear crucial for fostering understanding and agreement between dyad members, ultimately leading to perceived ACP concordance.