Preservation of the capacity to appoint a proxy decision maker: implications for dementia research

SYH Kim, JH Karlawish, HM Kim, IF Wall… - Archives of general …, 2011 - jamanetwork.com
Context Research involving persons with impaired decision-making capacity (such as
persons with Alzheimer disease [AD]) remains ethically challenging, especially when the …

Alternative decision-makers' perspectives on assent and dissent for dementia research

E Overton, PS Appelbaum, SR Fisher, D Dohan… - The American Journal of …, 2013 - Elsevier
Objectives Investigators generally address the ethical dilemma of patients' decisional
impairment in Alzheimer disease (AD) research by obtaining consent from alternative or …

Variability of judgments of capacity: experience of capacity evaluators in a study of research consent capacity

SYH Kim, PS Appelbaum, HM Kim, IF Wall… - Psychosomatics, 2011 - Elsevier
Background Assessment of decision-making capacity is a common and important function of
psychiatric consultants. However, the sources of variability in evaluators' judgments have not …

" A Feeling that You're Helping": Proxy Decision Making for Alzheimer's Research

LB Dunn, JG Hoop, S Misra, SR Fisher… - Narrative Inquiry in …, 2011 - muse.jhu.edu
Surrogate (proxy) decision makers must make research decisions for people with dementia
who lack decision-making capacity. Proxies' decision-making processes are minimally …

Decision making for participation in dementia research

BS Black, M Wechsler, L Fogarty - The American Journal of Geriatric …, 2013 - Elsevier
Objectives This study examined the decision-making process used by individuals asked to
participate in dementia research and their opinions on how future proxy research decisions …

Willingness to participate in Alzheimer disease research and attitudes towards proxy-informed consent: Results from the Health and Retirement Study

L Ayalon - The American Journal of Geriatric Psychiatry, 2009 - Elsevier
Objectives: To evaluate public opinion about participation in Alzheimer disease (AD)
research and willingness to have a proxy-informed consent. Design: Cross-sectional …

Neuropsychological correlates of capacity determinations in Alzheimer disease: implications for assessment

BW Palmer, KA Ryan, HM Kim, JH Karlawish… - The American journal of …, 2013 - Elsevier
Objectives To explore the neuropsychological correlates of the capacity to consent to
research and to appoint a research proxy among persons with Alzheimer disease. Design …

“Thinking about it for somebody else”: Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice

LB Dunn, SR Fisher, M Hantke, PS Appelbaum… - The American Journal of …, 2013 - Elsevier
Objectives Ethical guidelines suggest that, when enrolling patients with dementia in
research, alterative decision makers (proxies) should base their decision on a “substituted …

Determinants of capacity to consent to research on Alzheimer's disease

BW Palmer, AL Harmell, LL Pinto, LB Dunn… - Clinical …, 2017 - Taylor & Francis
ABSTRACT Objective: Investigators conducting Alzheimer's disease (AD) research need to
consider participants' capacity to consent. Cognitive functioning is a significant predictor of …

What do people at risk for Alzheimer disease think about surrogate consent for research?

SYH Kim, HM Kim, C McCallum, PN Tariot - Neurology, 2005 - AAN Enterprises
Background: Research involving decisionally incapable adults remains an unsettled and
controversial policy issue, especially for protocols that involve significant risk to participants …