CERGAS Seminar "Better at home? The burden of informal home care for older people with dementia in the Milan metropolitan area"

Authors: Simone Manfredi, Michela Meregaglia, Eleonora Perobelli, Andrea Rotolo, Elisabetta Notarnicola

Introduction

Dementia is a leading cause of disability in older populations worldwide and represents a significant burden for health and social care systems, families, and societies. In many countries, people with dementia are cared for at home for as long as possible and mostly informally by family members. The purpose of this study is to investigate the economic and social impact of dementia home care in the Milan metropolitan area.

Methods

The target participants are caregivers recruited through a network of public and non-profit organizations. The study received approval by the Ethics Committee of Bocconi University in December 2022. The data collection combined qualitative and quantitative methods. First, ten semi-structured caregiver interviews explored emerging needs in home care and informed the survey development; all interviews were recorded, transcribed, coded, and analyzed. Second, a survey data collection is ongoing (deadline: April 2023) using a self-administered caregiver questionnaire composed by three sections: 1) a 35-item cost-of-illness questionnaire aimed to quantify the consumption of health and social care resources and the related dementia’s socioeconomic burden including family’s out-of-pocket costs and caregiver’s productivity losses in the last 12 months; 2) a quality-of-life section including the EQ-5D-5L (proxy) about the person with dementia and the CarerQoL-7D on caregiver’status; 3) a discrete choice experiment (DCE) to elicit caregiver’s preferences and willingness-to-pay for alternative home care packages. The DCE includes four attributes: 1) the number of home care hours per month; 2) the type of home care; 3) the caregiver peer support group; 4) the monetary (€) cost per month. An optimal orthogonal in the differences design was used to create nine choice sets with Ngene. A mixed logit model is run in Stata to analyze the responses.

(Preliminary) Results

The semi-structured interviews revealed a wide spectrum of unmet needs in home care and difficulties in identifying the appropriate services that could alleviate the family’s burden. So far, a total of 78 questionnaires (out of 100 targeted) have been collected. Most caregivers were children (64%), female (76%) and employed (73%), with a mean (±SD) age of 58.2±11.8 years; the mean (±SD) CarerQoL utility score (UK tariffs) and VAS were 6.8±2.6 and 4.7±2.0, respectively. Around 25% of the employed caregivers reported working time reduction and/or unpaid leave. The mean (±SD) age of people with dementia was 82.7±7.3; 64% were female and 56% also had a paid caregiver. Their mean (±SD) EQ-5D5L utility index (Italian tariffs) and EQ VAS were 0.29±0.31 and 47.4±23.2, respectively. Over the last 12 months, the most frequently consulted physician was the general practitioner (67%) followed by the neurologist (45%); antidepressants (47%) and anticoagulants (35%) were the most consumed drug categories. The DCE results showed that increased home care hours, mixed health and social home care and caregivers’ sessions with professional support were mostly valued by caregivers.

Conclusions

This study is expected to provide relevant information to policymakers to understand the socioeconomic burden of informal care for older people with dementia in Italy and to recalibrate home care services according to social demand.

Speakers:

Michela Meregaglia is researcher at the Research Center on Health and Social Care Management (CERGAS) of SDA Bocconi School of Management and adjunct professor at the Department of Pharmaceutical Sciences of the University of Eastern Piedmont. She is the author of various publications in the fields of pharmacoeconomics, health management and health services research.

Simone Manfredi is research assistant at the Research Center on Health and Social Care Management (CERGAS) of the SDA Bocconi School of Management. He holds a M.Sc. in “Economics and Management of Government and International Organizations” from Bocconi University. His research interests include social policy design, social innovation management, and multi-level governance.

Link zoom: https://unibocconi-it.zoom.us/j/93254117622?pwd=R2FIcTJGL1JENHg0dzc1RFhERWZzdz09

Meeting ID: 932 5411 7622

Passcode: 205354

For those willing to participate in person, please write to erica.dugnani@sdabocconi.it before Tuesday, May 2nd.