Researchers found that 58% of total dementia-related costs are linked to unpaid care provided by family members, friends and other informal caregivers, highlighting the substantial burden of dementia beyond healthcare systems alone. Notably, unpaid informal care (€128 billion annually) exceeded direct healthcare costs (€93 billion), underscoring the often-hidden contribution made by families and caregivers.1
The study estimated that approximately 8.8 million people were living with dementia across high-income European countries in 2019, with dementia-related costs equivalent to around 1.6% of regional GDP, underlining the condition's growing impact on healthcare systems, economies and families.1
Dementia is one of Europe's leading causes of disability, dependency and mortality among older adults.2 As populations continue to age, researchers say both the number of people living with dementia and the economic burden associated with the condition are expected to rise substantially in the coming decades.3
Prof. Richard Dodel, lead author of the study, commented, "As Europe's population continues to age, we can expect the number of people living with Alzheimer's disease and other forms of dementia to increase substantially in the coming years. One of the most striking findings from this study was the scale of informal care provided by families and friends. While healthcare costs are significant, the majority of the burden falls on unpaid caregivers, whose contribution is often overlooked despite being essential to supporting people living with dementia."
The research forms part of the Cost of Illness in Neurology in Europe (COIN-Eu) initiative, led by the European Academy of Neurology (EAN), which aims to assess the societal and economic burden of major neurological conditions across Europe. For this analysis, researchers conducted a systematic review of 45 European dementia cost studies published between 2010 and 2023, combined with prevalence estimates from the Global Burden of Disease 2021 study.1,2
Previous estimates of dementia costs across Europe have been difficult to compare because individual studies use different methods and reporting approaches. To address this, researchers applied a standardised framework to harmonise data across countries, converting all figures to 2019 purchasing power parity-adjusted euros and categorising costs into direct medical costs, informal care costs and indirect costs such as productivity losses.1
The study found that the average annual societal cost per person living with dementia was approximately €25,200, although substantial variation existed across Europe. Germany, Italy, the UK, France and Spain together accounted for approximately 68% of the total estimated economic burden, reflecting both population size and dementia care needs.1
Importantly, the authors note that the burden of dementia extends beyond financial costs alone. Family caregivers frequently experience emotional, physical and health-related challenges associated with long-term caregiving responsibilities.1
"The impact of dementia extends far beyond its financial cost," explained Prof. Dodel. "Family caregivers often face considerable emotional, physical and cognitive demands, particularly as the disease progresses into its later stages, which highlights the need for greater recognition and support for those providing care."
The findings highlight the need for policies that support both people living with dementia and those caring for them, including investment in care infrastructure, caregiver support services, earlier diagnosis pathways and prevention strategies targeting modifiable risk factors.1,3
Researchers also say the findings reinforce calls for more standardised approaches to measuring dementia-related costs — particularly the contribution of informal care — to improve comparisons across countries and strengthen future healthcare planning and policymaking.1
Prof. Dodel concluded, "While new treatments are offering hope for people in the early stages of Alzheimer's disease, there remains a significant need for therapies that can help those in more advanced stages. At the same time, we need stronger public health and health services research to better understand how best to support people living with advanced neurodegenerative diseases and the families who care for them."
