A Case Study of Opinions on Medical Agency in Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) Pubblico
Jin, Jennifer (Spring 2021)
Abstract
The current study aims to identify themes regarding medical agency in Alzheimer’s Disease and Alzheimer's Disease Related Dementias (AD/ADRD) and compare the perspectives of various stakeholders. A neuroethical analysis was done by conducting qualitative interviews, which revealed recurrent themes and knowledge gaps across four broad themes: 1. examination and evaluation of medical agency, 2. assignment of surrogacy, 3. current cognitive exams, 4. communication with various stakeholders about medical agency. The study results underscored the importance of developing a deeper understanding of a diversity of stakeholder perspectives, while also providing an opportunity for affected persons and their caregivers to learn about the importance of medical agency in their lives and introduce their viewpoint in the broader conversation.
Table of Contents
Introduction 1
Figure 1: Four aptitudes for decision-making capacity 2
Research Goals 10
Methods 11
Figure 2: Preliminary concept map 14
Results 15
Table 1: Overview of participants 15
Table 2: Themes and Subthemes 16
Theme 1: Examination and evaluation of medical agency 16
Theme 2: Assignment of surrogacy 21
Theme 3: Current cognitive exams 25
Theme 4: Communication about medical agency 29
Discussion 36
Figure 3: Updated concept map 37
Conclusion 45
References 46
Appendix 51
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