OBJECTIVES: Dementia is a leading cause of disability in Italy affecting 1.2 million people, mostly cared for at home informally by family members and for as long as possible. This study investigates the socioeconomic burden and quality-of-life (QoL) of people with dementia and their caregivers in the Milan metropolitan area.

METHODS: Data were collected in January-April 2023 using a 35-item cost-of-Illness questionnaire and two QoL questionnaires (i.e., EQ-5D-5L - proxy version and CarerQoL-7D). The cost analysis was conducted from: i) the health and social care system perspective (using regional tariffs for inpatient/outpatient services and prostheses, national reimbursement prices for drugs and local cost data for social assistance); ii) the family’s perspective (using self-reported out-of-pocket costs); iii) the societal perspectives (estimating caregiver’s productivity losses through the human capital approach). We applied a generalized linear model to identify factors associated with costs and QoL. The study was approved by the Ethics Committee of Bocconi University.

RESULTS: The sample included 106 caregiver-care recipient dyads. Most caregivers were children (64%) and female (68%). The mean CarerQoL utility score (0-100) and VAS (0-10) were 64.2±19.6 and 4.9±2.0, respectively. Care recipients had a mean age of 82.7±7.0; 66% were female. Their mean EQ-5D-5L utility index and EQ VAS were 0.297±0.345 and 49.1±22.8, respectively. Over the last 12 months, the mean economic burden was estimated at €14,362±13,594, divided into health (€3,234) and social (€11,128) care costs. The 79.9% (€11,474) of this amount was incurred by families, who only received a public allowance of €4,772±3,658 on average. The existence of comorbidities was associated with higher healthcare costs. The mean productivity loss was estimated at €1,772±4,479. Caregiver’s QoL was significantly lower for women and carers with chronic illnesses.

CONCLUSIONS: The care of dementia at home is associated with significant costs mostly incurred by families and poor QoL of both caregivers and care recipients.