Thoughts on the Future: The Perspectives of Elderly People with Early-Stage Alzheimer's Disease and the Implications for Advance Care Planning

Abstract

Background: Early diagnosis in dementia is promoted to allow patients to engage in advance care planning (ACP) while still competent to do so and thereby to extend their autonomy into futures in which they lack decision-making capacity. However, engagement of people with dementia in ACP lags behind. The aim of this study was to investigate the thoughts of people with early-stage Alzheimer's disease (AD) with regard to future care and treatment and the implications for ACP. Methods: A qualitative study using explorative semistructured interviews was conducted with 24 individuals diagnosed with early-stage AD. Results: Participants were found to be very capable of sharing their experiences, often becoming more open and talkative in the course of the interview. For participants, thinking about the future involved an ongoing process of balancing feelings of fear and hope, but the overall tendency among this group was to try to live one day at a time and avoid worrying about the future. Conclusions: Although ACP is considered to be a key element of high-quality palliative and end-of-life care, engagement in ACP by people with early-stage AD on their own initiative is limited. Additional interventions are essential in order to stimulate and support people with early-stage AD to initiate actions with regard to ACP. The development of alternative models for ACP in dementia care is recommended. However, the advisability of ACP in early-stage AD is not without dispute. Ethical issues, such as whether steering people toward ACP is justified, should be addressed in further research and the role of advance directives needs to be reconsidered.