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How Does an Alzheimer’s Disease Patient’s Role in Medical Decision Making Change Over Time?

Department of Medicine, the School of Social Work, University of Pennsylvania, hirschk{at}mail.med.upenn.edu

Sharon X. Xie, PhD

Department of Biostatistics and Epidemiology, the Alzheimer’s Disease Center, University of Pennsylvania

Chris Feudtner, MD, PhD, MPH

Division of General Pediatrics, the Children’s Hospital of Philadelphia, Leonard Davis Institute of Health Economics, Center for Clinical Epidemiology and Biostatistics, the Center for Bioethics, University of Pennsylvania

Jason H. T. Karlawish, MD

Department of Medicine, the Alzheimer’s Disease Center, Leonard Davis Institute of Health Economics, Center for Clinical Epidemiology and Biostatistics, Center for Bioethics, University of Pennsylvania

As persons with Alzheimer’s disease (AD) lose their ability to make decisions, someone else has to make decisions for them. We performed a prospective cohort study of 77 AD patient-caregiver dyads to examine when this transition occurs. When dementia severity surpassed a threshold marked by a Mini-Mental State Examination (MMSE) score less than 20, the level of caregiver-reported patient involvement in the medical decision-making process declined (Moderate [MMSE = 19-12]: Odds Ratio [OR] = 2.35, 95% confidence interval [95% CI] = 1.01-5.49; P = .048; Severe [MMSE < 12]: OR = 29.38, 95% CI = 5.98-144.25, P < .001). Furthermore, older patients (OR = 1.06, 95% CI = 1.00-1.12, P = .049) and mounting caregiver burden (OR = 1.12, 95% CI = 1.04-1.26, P = .003) were significant independent predictors of transitions to the caregiver-dominated medical decision-making process. These results provide clinicians with prognostic information that can help caregivers understand how their role in decision making will change over the course of a patient’s dementing illness.

Key Words: Alzheimer’s disease • dementia • decision making • caregiver burden • aging

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