title: How does an Alzheimer's disease patient's role in medical decision making change over time?
abstract: 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.
authors.affiliation: Department of Medicine, School of Social Work, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA 19104, USA. hirschk@mail.med.upenn.edu
authors.forename: Karen B
authors.initials: KB
authors.lastname: Hirschman
authors.forename: Sharon X
authors.initials: SX
authors.lastname: Xie
authors.forename: Chris
authors.initials: C
authors.lastname: Feudtner
authors.forename: Jason H T
authors.initials: JH
authors.lastname: Karlawish
mesh_terms: D000367:Age Factors; D000368:Aged; D000375:Aging / Q000523:psychology; D000544:Alzheimer Disease / Q000150:complications / Q000503:physiopathology / Q000523:psychology*; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D015331:Cohort Studies; D003657:Decision Making; D003704:Dementia / Q000209:etiology / Q000503:physiopathology / Q000523:psychology; D003858:Dependency, Psychological; D018450:Disease Progression; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016017:Odds Ratio; D010358:Patient Participation / Q000523:psychology*; D010414:Pennsylvania; D011237:Predictive Value of Tests; D011446:Prospective Studies; D011569:Psychiatric Status Rating Scales; D012720:Severity of Illness Index