LEADing advance care conversations: concordance amongst ADRD dyads

Abstract

AbstractBackgroundThe LEAD Guide (Life‐Planning in Early Alzheimer’s and Other Dementias)1 is a validated paper‐based dementia‐focused advance care planning (ACP) guide that addresses changes in cognition and goals of care along the ADRD continuum, preparing surrogate decision‐makers for loss of the care recipient’s decisional abilities. Achieving agreement on decision elements of ACP in care partner (CP)/care recipient (CR) dyads may reduce ambiguity, increase CP confidence, and assure that preferences and values are honored. Using multiple approaches, we developed a working definition of ACP concordance amongst ADRD dyads.MethodUsing the LEAD Guide as the foundation we developed the pilot LEAD Intervention, a community‐based NIH Stage‐1 behavioral intervention.2 This 9‐month study guided CP/CR dyads through a dementia‐focused ACP process that integrates a digital version of the LEAD Guide with ACP educational modules delivered through a web‐based platform. Dyads had the option of recording their care conversation. To understand the process of achieving dyadic consensus in elements of ACP, we conducted a scoping review of the literature and a qualitative analysis of recorded interviews.ResultOf 61 eligible dyads, 41 completed the LEAD intervention; 7 in‐depth recordings were obtained. Our scoping review of 6,788 manuscripts identified no operational definitions of ACP concordance, 35 that revealed essential elements of successful discussion processes and only one that characterized essential qualities of CPs. Using descriptive analysis,3 seven themes illustrating agreement on ACP issues were discerned: Respect/Regard for each other; use of Clarifying Processes; Conveying Health Care Scenarios to justify wishes; Affirmation of Understanding; Recognizing Uncertainty; Humor and Expression of Positive Emotions; and Trust. Notably, all seven dyads voiced confidence that they “finished the discussion successfully,” meaning reaching a state of concordance.ConclusionOur synthesis of the research literature and our qualitative findings suggests that a working definition of ACP decision concordance is when the caregiver understands the patient’s values that inform the preferences and choices of the patient, understands those choices and preferences and the rationale for the choices and preferences, and expresses a willingness to accomplish the patient’s wishes to the best of their ability. This definition contributes to research clarity in ACP investigations.