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

Johannes Hamann, MD; Katharina Bronner; Julia Margull; Rosmarie Mendel, PhD; Janine Diehl-Schmid, MD; Markus Bühner, PhD; Reinhold Klein, MD; Antonius Schneider, MD; Alexander Kurz, MD; Robert Perneczky, MD


J Am Geriatr Soc. 2011;59(11):2045-2052. 

In This Article

Abstract and Introduction


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.


The participation of patients in healthcare-related decisions is an ethical imperative that patient organizations and treatment guidelines promote. The mental health guidelines for most major psychiatric disorders, such as depression or schizophrenia, strongly recommend the inclusion of patients in all healthcare decisions,[1,2] but Alzheimer's disease (AD) is an exception in this regard; although guidelines emphasize the disclosure of diagnosis and stress patient independence as a major aim, they consider impaired decisional capacity to be a limiting factor for patient participation at the same time.[3] Although AD is characterized by a cognitive decline that impairs the participation in medical decision-making,[4,5] decisional capacity for important medical and social decisions might still be intact in patients in the early clinical stages of AD.[6] Important medical and social decisions that need to be made in these early stages are the introduction of an advance directive, a decision about driving, the initiation of antidementia treatment, and participation in clinical trials. Preventing patients from participating in these decisions not only reduces patient autonomy, but also risks ignoring the patients' will while they are still capable of making decisions, which might result in postponed decisions until decisional capacity has been lost.

Although there is some information on patient participation preferences and decisional capacity in mild to moderate dementia in AD,[7] knowledge of patient preferences in the early clinical stages is unclear. In addition, previous research (on individuals with AD)[7] has mostly emphasized the patient–caregiver dyad (and neglected the patient–doctor dyad), which might not be appropriate for patients with minor cognitive deficits, who tend to see their doctors unaccompanied.

It was thus the aim of the present study to analyze the preferences of patients with amnestic mild cognitive impairment (aMCI) and mild dementia in AD regarding different aspects of decisions and to correlate these findings with different measures of patient decision-making capacity. The views of the patients' relatives and of the referring physicians as to who should be involved in decision-making were also explored.


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