Estimating the costs of informal care for individuals with brain health disorders from 2000 to 2021: a modelling study

Abstract

Background

The high prevalence of brain health disorders worldwide leads to large social and economic costs. A large and growing cost of brain health disorders is the time spent by caregivers providing informal (unpaid) care. The objective of this study was to estimate the financial impact of informal caregiving for 24 brain health disorders from 2000 to 2021.

Methods

In this global modelling study, we estimated hours of unpaid caregiving, lost hours of work, and associated forgone earnings for 24 brain disorders across 204 countries from 2000 to 2021. We estimated unpaid care time for each disorder using data from published studies and disease characteristics from the Global Burden of Diseases, Injuries, and Risk Factors Study 2023. We leveraged time-use diary data to model the relationship between informal caregiving time and lost hours of formal work, and used administrative data to estimate financial costs associated with these lost work hours.

Findings

We estimated that, globally, informal caregivers for brain health disorders provided 314·5 billion (95% uncertainty interval 265·3–376·0) hours of care in 2021, at a cost of US$1·7 trillion (1·5–2·1) in forgone earnings. Hours of informal care provided for brain health disorders have risen by an average of 3·3% (3·0–3·5) per year since 2000. Stroke contributed to the most hours of informal care, and dementia to the most lost earnings.

Interpretation

The costs of informal care for brain health disorders are large and growing. This study provides evidence in support of financial assistance for caregivers and highlights the potential benefits of investments in prevention and treatments for brain-related disorders.

Funding

Roche Holdings and Genentech.