Family function, psychological distress and burden in informal caregivers of people with dementia

Abstract Background Dementia presents a public health priority due to its high global prevalence, mortality, economic cost, and caregiver burden (CB). Dementia care can be stressful and may negatively influence the health of informal caregivers. This cross-sectional study aimed to identify psychological and social factors associated with subjective CB in informal home care providers of people with dementia (PwD), controlling for sociodemographic, clinical, and care-related variables. Methods We included 115 informal caregivers of PwD from community settings (mean age: 54.0±12.4 years; 81.7% women). Participants fulfilled the Zarit Burden Interview (ZBI-12), the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), the Family APGAR, and the short IQCODE used to assess dementia severity. Multiple linear analyses were used to analyse the data. Results The mean caregiving duration was 4.8±4.8 years, and 55.7% of informal caregivers extend care for >40 hours/week. We found that a total of 52.5 % of informal caregivers experienced a high CB (ZBI-12 cut-off score: 17). Univariate analyses showed an association between depression (β = 0.36; p < 0.001), anxiety (β = 0.52; p < 0.001), family dysfunction (β = 0.36; p < 0.001), and CB. Regression analyses showed that CB was the most strongly associated with anxiety (β = 0.51; p < 0.001). This association weakened (0.47; p < 0.01) when family function was added to the final model (β=-0.22; p < 0.05). The final model explained 23.5% of the variance in CB. No associations between the caregiver's age, sex, caregiving duration, the extent of care per day, use of community care, dementia severity, and depression were identified. Conclusions Long-term care for people living with dementia can be very demanding. Thus, the implementation of tailored interventions to enhance family function and diminish psychological distress can mitigate level of caregiver burden. [Grant support: APVV-22-0587]. Key messages • Dementia caregiving is a global public health priority. • The caregiver’s burden and distress can be alleviated by the interventions focusing on family dysfunction.