Determinants of burden and quality of life of informal caregivers of individuals with dementia

Abstract

Introduction: Little is known about the impact of dementia in the quality of life (QoL) and overall burden of informal caregivers. The aim of the study is to access the QoL and burden of informal caregivers of PwD and identify its associated factors.Methods: Descriptive cross-sectional design with a non-probabilistic and purposive sample of 187 caregivers of PwD. Data collection included the EQ-5D-3L and the Informal Caregiver Burden Assessment Questionnaire (QASCI). Multivariate linear models were estimated to identify determinants of informal caregivers QoL and burden.Results: The results show that the QoL of the informal caregivers was low, and overall burden was found to be moderate. Different explanatory factors were identified for QoL and burden, however, in both cases the familiar relationship and PwD pain/discomfort were identified as potential explanatory factors.Conclusions: Our findings highlight that multiple factors of the informal caregiver and the PwD were correlated with QoL and burden suggesting that the informal care occurs in a complex environment determined by dyads characteristics that together can result in high or low impact for caregiver’s personal life. It is crucial to include informal caregivers as a priority topic regarding dementia health policies, being essential to promote their wellbeing and prevent serious burden, which might also lead to better care and improved QoL for the PwD as well.