Dementia Caregivers: An Exploration of Their Knowledge, Beliefs, and Behavior Regarding Advance Care Planning For End-of-Life Care

The purpose of this study is to explore what knowledge dementia caregivers have about advance care planning (ACP), how they learn to execute formal advance directives (ADs) or have engaged in an informal ACP process, and how they understand their roles as decision makers for the patients. Factors that contribute to the completion of an ACP process such as demographic, psychosocial, and situational factors are identified. From the grounded theory data analysis, a theory emerged about how ACP is accomplished and used by caregivers. Findings reveal that caregivers understand ACP as having the power to shape the dying process for dementia patients. It is not just about executing formal written ADs but how caregivers exercise that power. Caregivers’ knowledge and beliefs are reflected in their behavior regarding ACP in both how they do the ACP process and how they use ACP. For the caregivers in this study, the process of ACP occurs along a trajectory from: years before dementia to dementia diagnosis to end stage and death. At each of these stages, actions taken by the caregivers and their motivation are identified. Three key features of the ACP process in all three stages are examined: conversations within the family and with trusted others, gaining knowledge of ACP, and keeping ACP documents. How caregivers use ACP is based on how they define their roles as decision makers for their patients by: accepting responsibility for making difficult decisions regarding treatment for the patients, using ACP as an effective tool to shape the dying process for their patients, and doing battle with health care professionals to honor patients’ wishes. This definition is shaped by the meaning caregivers give to ACP, how caregivers understand life sustaining measures, and caregivers’ knowledge of patients’ end-of-life wishes. This new theory, the Dementia Caregiver Advance Care Planning Theory, adds new knowledge as the first model specific to dementia caregivers and adds dimension and depth to the current existing ACP models by detailing an ACP process, demonstrating the impact of conversations on the process, and identifying both the most important influences and the primary relationship in the decision making process