Patient Participation in Medical and Social Decisions in Alzheimer's Disease

Authors


Address correspondence to PD Dr. Johannes Hamann, MD, Klinik und Poliklinik für Psychiatrie und Psychotherapie, Technische Universität München, Germany. E-mail: j.hamann@lrz.tum.de

Abstract

Objectives

To analyze the preferences of people with amnestic mild cognitive impairment (aMCI) and mild dementia in Alzheimer's disease (AD) regarding different aspects of healthcare-related decisions, to correlate these findings with different measures of decision-making capacity, and to explore the views of relatives and referring physicians.

Design

Cross-sectional survey.

Setting

University-based memory clinic in Munich, Germany.

Participants

One hundred people with aMCI or mild AD, their relatives (N = 99), and their referring physicians (N = 93).

Measurements

Participation preferences and decisional capacity and assessment of these measures according to relatives and physicians.

Results

Patients had a preference for participation in healthcare-related decisions, especially in social ones. Overall, individuals wanted their relatives to play a secondary role in decision-making. Relatives and referring physicians performed poorly in predicting the individuals’ participation preferences, and relatives wanted to attribute less decision-making power to patients than the patients did themselves. Patients refrained from participation if they had lower Mini-Mental State Examination scores or were unsure about their decisional capacity. There were deficits in decision-making capacity, which mostly related to understanding of the information presented. There was only weak correlation between the different measures (patient's, relative's, and physician's estimate, MacArthur Competence Assessment Tool for Treatment) of the patients’ decisional capacity.

Conclusion

The combination of marked participation preferences and impairments in the decisional capacity of individuals with aMCI and early AD constitute an ethical and practical challenge. A thorough implementation of structured probes of the patients’ decisional capacity combined with interventions that aid patients in their decision-making capability might help to overcome some of these challenges.

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