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Caregivers’ preferences for the treatment of patients with Alzheimer’s disease

From the Departments of Medicine (Drs. Asch and Karlawish), Sociology (J. Klocinski), Molecular and Cellular Engineering (Dr. Merz), and Neurology (Dr. Clark), Philadelphia Veterans Affairs Medical Center (Dr. Asch); Alzheimer’s Disease Center (Drs. Clark and Karlawish, and J. Klocinski), Center for Bioethics (Drs. Asch, Karlawish, and Merz), Institute on Aging (Drs. Asch, Clark, and Karlawish), and Leonard Davis Institute of Health Economics (Dr. Asch), University of Pennsylvania, Philadelphia.

Address correspondence and reprint requests to Dr. Jason H.T. Karlawish, Institute on Aging, 3615 Chestnut Street, Philadelphia PA 19104.

OBJECTIVES: To learn caregivers’ preferences for the treatment of AD with a disease-slowing therapy, and to identify relationships between these preferences and the characteristics of caregivers and patients.

METHODS: A structured interview with 40 caregivers of patients with AD. Preferences were measured for an AD-slowing medicine with the benefits of a gain in survival and a delay to nursing home placement (NHP), and risks of three degrees of severity of GI bleeding.

RESULTS: Using a six-point scale ranging from "not at all important" to "extremely important," the median rating of the importance of survival as a treatment benefit was "very important" and of a delay to NHP was "extremely important." Fifty-five percent of the caregivers identified a benefit more important than these two benefits. Qualitative data showed that caregivers’ reasons for these preferences featured the importance of patient quality of life, and the preservation of patient cognition and function. Bivariate analyses showed that increasing importance of the benefit of survival was related to higher assessments of the patient’s health and quality of life, and lower ratings of the caregiver’s experience of burden. In order to slow disease progression by 1 year, 25/38 (66%) of caregivers would accept some risk of death from gastrointestinal bleeding. Regression models showed that risk tolerance was higher among caregivers who were working, adult children caring for early stage patients or from families with an history of dementia.

CONCLUSIONS: Caregivers generally are willing to tolerate notable amounts of risk to slow AD progression. Factors that describe the caregiver’s experience and perception of the patient and the patient–caregiver relationship influence how they want to treat the disease. This information may be useful for decisions about how to study and prescribe AD treatments.

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