Background

Niemann-Pick Type C disease (NPC) is a rare neurodegenerative disease of metabolic origin and diverse clinical profile. Caregivers of adult NPC patients must meet a variety of demands whose nature and scope are closely connected to the stage and progression of this disease. As a result, these caregivers may be subjected to more acute psychological stress and anxiety than non-caregivers, as both a permanent disposition and a temporary experience.

Objectives

The primary aim of the study was twofold: 1) to examine the level of anxiety and perceived stress experienced by caregivers involved in the long-term therapeutic process of adults with NPC; and 2) to analyze how the psycho-emotional burden changes depending on a patient’s condition.

Material and methods

A set of questionnaires containing STAI and PSS-10 was completed by 19 long-term family caregivers of NPC patients and 19 healthy people with no experience in the care of chronic diseases. Patients with NPC were examined, and their condition was assessed using the Barthel scale.

Results

There were no statistically significant differences between the level of psychological stress and anxiety in respondents from the control group and the research group. The patients’ condition did not differentiate the caregivers’ level of psychological burden.

Conclusions

The level of tension and anxiety felt by caregivers of patients with NPC does not appear to vary simply with patients’ status. Additional information may be provided by studies on a broader sample of people, taking into account various psychosocial variables.