A Case Study of Opinions on Medical Agency in Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) Open Access

Jin, Jennifer (Spring 2021)

Permanent URL: https://etd.library.emory.edu/concern/etds/0g354g62j?locale=en


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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