Dementia advance care planning perspectives within an Alabama community: A theory guided qualitative study

Abstract

Advance Care Planning (ACP) is a process that supports decision-making about end-of-life goals. Dementia ACP is recommended during the early stages of the disease to empower the individual living with dementia to express wishes for quality of life before experiencing significant cognitive decline. ACP during early dementia is rare, and hesitancy to initiate difficult and emotional conversations may be a contributing factor to delaying ACP. Effective ACP includes input from the clinician, patient, and family; however, there is limited dementia ACP research that includes all three perspectives. This secondary qualitative data analysis, guided by Social Cognitive Theory, aims to better understand the convergent and divergent views of ACP among dementia clinicians, caregivers, and individuals living with pre-clinical dementia. Study findings support the need for early, frequent, compassionate, and patient-centered ACP conversations that are considerate of the interests, perspectives, and wishes of the individual with dementia and their caregiver.