TY - JOUR
T1 - Patient participation in medical and social decisions in Alzheimer's disease
AU - Hamann, Johannes
AU - Bronner, Katharina
AU - Margull, Julia
AU - Mendel, Rosmarie
AU - Diehl-Schmid, Janine
AU - Bühner, Markus
AU - Klein, Reinhold
AU - Schneider, Antonius
AU - Kurz, Alexander
AU - Perneczky, Robert
PY - 2011/11
Y1 - 2011/11
N2 - 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.
AB - 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.
KW - Alzheimer's disease
KW - patient autonomy
KW - patient participation
KW - shared decision-making.
UR - http://www.scopus.com/inward/record.url?scp=81755166229&partnerID=8YFLogxK
U2 - 10.1111/j.1532-5415.2011.03661.x
DO - 10.1111/j.1532-5415.2011.03661.x
M3 - Review article
C2 - 22092150
AN - SCOPUS:81755166229
SN - 0002-8614
VL - 59
SP - 2045
EP - 2052
JO - Journal of the American Geriatrics Society
JF - Journal of the American Geriatrics Society
IS - 11
ER -