Planning for a future life with dementia - a qualitative study

Abstract

Background: Advance Care Planning (ACP) offers great advantages for keeping patients’ personal values and beliefs at the core of decisions regarding their future. Uptake in dementia care is low however, because persons with dementia (PWD) and their informal caregivers (IC’s) do not understand the value of or know how to proceed such plans. To increase uptake, it should start earlier in the disease process. In order for health care professionals to provide better guidance to persons with Early Stage Dementia (ESD) and their IC’s during this process of ACP, it should be clear how they currently give shape to this process and how it is experienced. Aim: To gain better understanding of the ways that persons with ESD and their IC’s give shape, and experience the process of planning for a future life with dementia. Methods: A qualitative, exploratory research design was used. Six persons with ESD and their IC’s participated in the study. Interviews with all twelve participants took place individually between February and June of 2016 in the Netherlands. Within this study, elements of the Grounded Theory approach were used. Results: Three major themes were identified describing the dynamic process on how participants plan for their future. They may switch back and forth between these themes through time: 1) The future is now; 2) Considering the future and 3) Anticipating the future. Conclusion and implications of key findings: A great focus lies on practical plans, or plans anticipating physical decline, avoiding difficult conversations. If we want personal values and beliefs to lie at the core of future decisions, then cognitive decline and the loss of decisional capacity should be considered more profoundly. Healthcare professionals should address these issues with delicacy and guide their patients in exploring their wishes.