Michelangelo Bartolo, Danila De Luca, Mariano Serrao, Elena Sinforiani, Chiara Zucchella, Giorgio Sandrini
DOI: 10.2340/16501977-0612

Objective: The aim of this study was to analyse the burden on caregivers of chronic neurological patients taking part in community neurorehabilitation programmes, and to describe caregivers’ socio-demographic features and needs.
Subjects: A total of 118 pairs of chronic neurological patients and their caregivers.
Methods: Caregivers completed the Caregiver Burden Inventory, the Beck Depression Inventory, and an ad hoc socio-demographic questionnaire. The EuroQol-5D was used to measure patients’ quality of life. Patients’ cognitive status and functional independence status were assessed using the Mini-Mental State Examination and Barthel Index, respectively.
Results: Data from 105 patient-caregiver pairs were analysed. The majority of caregivers (mean age 63. 01 ± 12. 3 years) were women (58%); 72% were spouses/partners. The burden of care was distributed across the 5 domains of the Caregiver Burden Inventory as follows: objective burden (34%), developmental burden (25%), physical burden (22%), social burden (10%), emotional burden (9%). Care burden correlated negatively with patient’s functional independence (p = 0. 008) and quality of life (p = 0. 000) and positively with caregiver depression (p = 0. 000). Of the caregivers, 65. 7% requested interventions aimed at reducing their burden.
Conclusion: There is a need to define structured interventions for assessing, preventing or managing problems related to stressful caregiving situations across the care continuum.