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July 3, 2025 — As dementia rates surge worldwide, a growing body of research reveals that the true cost of care far exceeds official health spending figures — driven largely by the unpaid labor of family and friends. While governments allocate billions to treat and manage dementia, informal caregiving now represents the silent backbone of dementia support systems across continents, imposing profound economic, social, and emotional tolls on caregivers.
A landmark U.S. study recently quantified this disparity, finding that while direct medical expenditures for dementia totaled $53 billion, the value of unpaid caregiving soared to $224 billion, pushing the overall cost to $277 billion annually. Comparable trends are evident globally, with low- and middle-income countries (LMICs) bearing an increasingly disproportionate share of the burden.
A Global Epidemic with Localized Impacts
The World Health Organization (WHO) estimates that over 55 million people live with dementia worldwide — a figure projected to reach 139 million by 2050. Dementia is now one of the leading causes of disability among older adults globally, with annual global costs exceeding $1.3 trillion. Yet formal care systems remain under-resourced in many regions, shifting the weight of care onto families.
In countries with strong long-term care infrastructure, such as Sweden, the Netherlands, and Germany, formal support services help reduce the burden on families. But even there, family caregivers provide a large share of daily assistance. In Asia, Africa, and Latin America, where formal care is less accessible or culturally discouraged, the reliance on family caregiving is nearly absolute — often without financial support, training, or respite services.
“Unpaid caregivers are the invisible workforce propping up global dementia care,” said Dr. Amina Rezai, a global health economist. “Their contributions are essential, but they come at great personal cost.”
The Human Cost of Caregiving
While caregiving can be fulfilling, it is also associated with higher rates of depression, physical health decline, social isolation, and financial insecurity. Globally, millions of caregivers are forced to reduce work hours or exit the labor market, especially women, who make up the majority of informal caregivers.
A 2024 OECD report found that across member countries, unpaid caregiving accounts for up to 70% of dementia care hours. In India, for example, caregivers spend an average of 45 hours per week supporting loved ones, with little or no external help. In Brazil, the caregiving burden falls heavily on middle-aged women, many of whom give up formal employment.
Care Disparities Across and Within Countries
The global picture is also marked by deep inequalities. Regions with higher prevalence of chronic diseases, poor public health infrastructure, and limited social safety nets face greater caregiving demands. A recent cross-country study found that in sub-Saharan Africa, dementia patients often go undiagnosed or untreated, placing enormous stress on families already grappling with poverty and limited access to health services.
Even within high-income countries, disparities persist. Rural communities, low-income households, and ethnic minorities often lack access to dementia specialists, adult day programs, and home health workers. In the U.S., states like West Virginia and Kentucky, despite lower overall costs of living, had among the highest dementia care costs due to extensive unpaid care hours.
A Shrinking Support System Post-COVID
The COVID-19 pandemic further exposed vulnerabilities in global caregiving systems. Many home health agencies, adult day centers, and assisted-living facilities closed, leaving families to fill the gap. Workforce shortages in caregiving and home health remain acute in both developed and developing nations. In many countries, essential programs such as Meals on Wheels have waitlists or have reduced services due to funding constraints.
“Caregivers are burning out, and systems are stretched thin,” noted Dr. Rezai. “We face a tipping point unless meaningful investment is made in long-term care infrastructure and caregiver support.”
The Path Forward: Recognition, Relief, and Reform
Experts argue that dementia care must be reimagined with caregivers at the center. That includes:
- Formal recognition of unpaid care as a critical component of national health strategies
- Financial support, including stipends, tax credits, or paid leave for family caregivers
- Expanded access to respite care, adult day services, and home health workers
- Workplace flexibility policies to help employed caregivers remain in the workforce
- Culturally sensitive caregiver education and training, especially in LMICs
International organizations, including the WHO and Alzheimer’s Disease International (ADI), are calling for greater investment in dementia strategies as part of aging and health policy reforms. In 2025, fewer than 40% of countries have a national dementia plan in place.
“We must stop treating unpaid care as free labor and start recognizing it as essential, skilled work,” said Dr. Michael Tan of ADI. “The global dementia response must account for both the patient and the caregiver — or we risk failing them both.”
Dementia Crisis Mental Incompetency by bryanfagan.com
