Perspectives and Experiences of Persons With Dementia With Advance Care Planning: An Integrative Literature Review

Abstract

Objective:An integrative review of the literature on advance care planning (ACP) preferences and practices from the perspective of persons with dementia (PWDs) was conducted, both to learn how health-care providers might engage and empower PWDs in ACP during the early stages of dementia and to identify where researchers should focus future work to improve ACP in this population.Methods:In November 2017, CINAHL, Legal Collection, PsycINFO, PubMed, and SocIndex were searched for empirical studies with PWDs as participants and ACP as a topic of interest.Results:Eighteen articles, which sampled 1304 PWDs, were found, focusing on 4 domains: engagement in and correlates of ACP participation; ability and attitudes toward ACP participation; ACP interventions; and values and preferences for end of life (EOL). Demographics were reported for correlates of participation. Many PWDs held a neutral to negative view toward ACP, although values exploration exercises in interventions were well received. No intervention study reported significant findings for ACP participation. Most PWDs emphasized the importance of family at EOL.Conclusion:Research is needed with methodologically rigorous designs and theoretical frameworks that examine cognitive, psychosocial, and environmental factors influencing ACP attitudes, preferences, and behaviors among PWDs in order to improve engagement among this population.