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Caregiving in progressive supranuclear palsy

From the Henry M. Jackson Foundation (Dr. Uttl) and the Cognitive Neuroscience Section (Drs. Uttl and Grafman, and P. Santacruz), Medical Neurology Branch; and the Neuropharmacology Unit (Dr. Litvan), Henry M. Jackson Foundation and Medical Neurology Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD.

Address correspondence and reprint requests to Dr. Jordan Grafman, Cognitive Neuroscience Section, NINDS/MNB/NIH, Building 10, Room 5C205, 10 Center Dr., Bethesda, MD 20892-1440; e-mail: jgr{at}box-j.nih.gov

Background: Basic issues regarding factors influencing progressive supranuclear palsy (PSP) patient caregiver burden remain unresolved, including whether and how disease severity and duration influence caregiver burden.

Objective: To examine the relation between PSP patient caregiver burden and disease severity, describe the time course of caregiver burden in relation to disease progression, and identify the contribution of other factors (e.g., patient memory and behavioral problems, caregiver gender) to caregiver burden.

Methods: Mail survey of 180 caregivers of PSP patients (living at home and cared for by nonprofessionals) who were members of the Society for Progressive Supranuclear Palsy. The survey included the Burden Interview, an instrument measuring caregiver burden by inquiring how they feel about different aspects and demands of caregiving.

Results: Caregiver burden was related to both PSP disease severity (r = 0.40) and disability/need for assistance (r = 0.43). The relation between burden and disease duration was nonlinear, following the same time course as disease severity; the burden increased during the first 18 months postdiagnosis and leveled off thereafter. Women reported more burden than men (caregiver sex r² = 0.05), even after controlling for disease severity and duration (r² = 0.22) and patient gender (r² < 0.01; NS), patient depression (r² = 0.09), and aggressiveness (r² = 0.02).

Conclusion: Burden in PSP is related to disease severity, disease duration, and caregiver gender (even after controlling for patient's memory, patient depression, and aggression).

The contribution of the first two authors was equal and their names appear in the order determined by a coin toss.

Received April 24, 1998. Accepted in final form June 5, 1998.

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