Quality of life and burden during the COVID-19 pandemic: a longitudinal study with family caregivers of persons living with Alzheimer’s disease

Abstract

Introduction: The COVID-19 pandemic intensified the challenges faced by family caregivers of persons living with Alzheimer’s disease, potentially affecting their psychological, behavioral, and physiological well-being. Understanding how these processes evolve over time is critical for informing targeted interventions.

Methods: A longitudinal study was conducted with 130 Portuguese family caregivers assessed at three time points over a 12-month period. Measures included quality of life (QoL), caregiver burden, psychological distress, forgiveness, health behaviors, caregiving competence, family stress, and heart rate variability (HRV). Linear mixed-effects models and mediation analyses were performed while controlling for caregiver age and dementia severity.

Results: Physical QoL and health behaviors initially declined but subsequently demonstrated a trend toward recovery over time, whereas mental QoL showed a sustained decline. HRV, caregiving competence, and family stress increased throughout the study period. Forgiveness mediated the relationship between psychological distress and both caregiver burden and physical QoL, but not mental QoL. Health behaviors did not mediate the association between HRV and caregiver burden.

Discussion: These findings highlight the dynamic and multifaceted nature of caregiving under prolonged stress conditions. Although caregivers demonstrated adaptive processes over time, the persistent decline in mental QoL underscores their continued psychological vulnerability. The mediating role of forgiveness suggests that it may serve as an important protective mechanism and a promising target for interventions aimed at improving caregiver well-being.