Caregiving in progressive supranuclear palsy

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Abstract

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 Δr2 = 0.05), even after controlling for disease severity and duration (Δr2 = 0.22) and patient gender (Δr2 < 0.01; NS), patient depression (Δr2 = 0.09), and aggressiveness (Δr2 = 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).

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