Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors

Abstract

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers' lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers' global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients' and caregivers' characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver's wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.