Courage in Care Planning: Advance Care Planning Readiness in the Context of COVID19 for Caregivers of Individuals Living with Dementia

Abstract

AbstractBackgroundCaregivers of individuals living with dementia frequently make medical decisions and develop care plans for future needs of care recipients, often without a clear understanding of those needs. For many, the COVID19 pandemic has exacerbated these challenges. Educational tools are needed to guide caregivers about when and how to raise the topic of advance care planning (ACP).MethodAs part of a larger study about the utility of video decision aids for ACP in dementia, caregivers of individuals living with dementia completed online surveys and watched educational videos about COVID19 and ACP. One day, one week and one month following watching the videos, we assessed ACP‐related knowledge, thoughts, readiness, plans, conversations, and actions in quantitative (validated ACP Engagement Survey) and through qualitative open‐ended questions. Forty‐six caregivers participated. For this analysis, we examined the subset of participants who were not at the most engaged level on the ACP engagement survey. We coded and conducted a content analysis of the open‐ended qualitative questions at one month follow up.ResultFrom pre‐post intervention, about 1/3 of participants increased their scores about ACP knowledge, thoughts, plans, and readiness to be a substitute decision‐maker or to make decisions for their loved one if they became very sick (possibly due to Covid). In particular, on one question (how ready are you to discuss with your loved one’s doctor whether or not there are certain health situations that would make your loved one’s life not worth living?), 74% of participants increased their engagement score pre‐ to post‐intervention. In qualitative analyses, 57% reported they engaged in ACP conversations after the intervention.ConclusionImmediately after the ACP video intervention, a substantial proportion of caregivers of individuals with dementia increased ratings of knowledge, confidence, and readiness to participate in ACP plans, conversations, and actions for their loved one. One month after the intervention, more than half engaged in ACP conversations. In future research, we will examine participant’s characteristics (e.g., dementia stage of loved one) in relationship to ACP Engagement responses. We plan to evaluate whether exposure to ACP video educational tools increases caregiver confidence in planning for healthcare decisions.