One in Five People with Dementia Receive No Care, Global Study Finds

As the world’s population rapidly ages, a new study led by researchers at the Yale School of Public Health finds that people living with dementia are struggling at an alarming rate.

Globally, at least one in five people living with dementia are receiving no care helping them with daily living, regardless of the wealth or development status of their country, according to the study. Heightening the sense of despair was an additional finding that this lack of care has persisted for years.

“This is not just a care issue; it’s a public health crisis,” said Dr. Xi Chen, PhD, associate professor of public health (health policy) at the Yale School of Public Health and the paper’s senior author. “We know that a lack of basic caregiving increases the risk of emergency room visits, nursing home admissions, depression, and even early death. This widespread absence of care is putting tremendous pressure on families, communities, and health care systems.”

The study analyzed data from over 10,000 individuals across the United States, England, 18 European nations, Israel, and China. It is believed to be the most comprehensive cross-national investigation to date into the caregiving experiences of people living with dementia.

The research drew from four large-scale longitudinal surveys: the U.S. Health and Retirement Study (HRS), the English Longitudinal Study of Ageing (ELSA), the Survey of Health, Ageing and Retirement in Europe (SHARE), and the China Health and Retirement Longitudinal Study (CHARLS). Participants were adults aged 50 and older who were residing in the community and who had been identified as living with dementia. All faced at least one limitation in basic or instrumental activities of daily living such as bathing, dressing, preparing meals, paying bills, and managing medications.

The researchers found that approximately 20% of individuals living with dementia received virtually no care in their day-to-day lives, regardless of whether they lived in a wealthy, middle- or low-income country or their country’s cultural approach to health care. There was no evidence that the global care gap narrowed between 2012 and 2018, the period covered by the study.

“We were surprised by the consistency of the findings across countries,” said Dr. Chen, who conducts research for Yale’s Alzheimer’s Disease Research Center and Institution for Social and Policy Studies. “No matter how developed a country is, the care deficit has persisted over time for at least the last 10 years.”

The study highlighted significant gaps in both formal and informal caregiving. Formal caregiving was described as professional or paid services provided at home or nursing home-based care. Informal assistance was care provided by family or friends.

In China, nearly 99% of older adults with dementia and daily limitations reported receiving no formal care, while the U.S. fared only slightly better, with 86% lacking formal support, the study said. Even in Europe and England, where social care systems are more developed, over 70% of participants went without formal assistance.

Although somewhat more common, informal care was also alarmingly insufficient—about one in four individuals with dementia reported receiving no informal care, according to the study.

The study also noted stark disparities based on socioeconomic status. Individuals with lower levels of education were significantly more likely to go without formal care, and individuals living alone often had little to no informal support, leaving them especially vulnerable.

The findings come as countries around the world adjust to a rapidly growing global population of people aged 65 and older. In 2022, over 55 million people globally were living with dementia. That number is projected to rise to 139 million by 2050.

Dementia is an umbrella term used to describe a group of diseases that cause a decline in memory, thinking, and other cognitive abilities that are severe enough to interfere with daily life. While dementia is more common in older adults, it is not a normal part of aging.

An estimated 6.9 million Americans are currently living with dementia. Individuals with dementia face significantlygreater caregiving needs and health care costs than those with other conditions, such as heart disease or cancer, the researchers said. Due to prolonged illness, people living with dementia often endure years of disability and dependence, with health and long-term care costs projected to reach $360 billion in 2024 and nearly $1 trillion by 2050, according to the Alzheimer’s Association.

Addressing dementia care gaps requires a multifaceted approach, Dr. Chen said. Significant financial investment is needed to improve access to care, increase professional caregiver staffing, and provide greater support to informal caregivers worldwide. Understanding cultural nuances and regional and family demographics is also critical when developing solutions, he said.

Dr. Chen urged policymakers to prioritize effective and context-specific care models for individuals with dementia.

“To close these care gaps, we need transformative policy changes, more funding for formal care, and better support for informal caregivers,” said Dr. Chen. “Without action, the burden on families and the consequences for older adults will only grow more severe.”

Joining Dr. Chen on the study were co-first authors Zhuoer Lin of the University of Illinois, Chicago and Yuting Qian of Yale University, as well as Thomas M. Gill and Heather Allore of Yale and Xiaohui Hou of the World Bank. Shanquan Chen of the London School of Hygiene & Tropical Medicine was a corresponding author.

The study was supported by funding from the U.S. National Institute on Aging and the UK’s Foreign, Commonwealth and Development Office, with additional support from the World Bank.

The full study is available in Nature Aging. The journal also published a related research briefing authored by Chen.