Absence of Care Among Community-Living Older Persons with Dementia and Functional Limitations: A Cross-National Analysis of Population Survey from 22 Countries

Background: The provision of long-term care for persons living with dementia (PLWD) who have functional limitations is a significant global public health challenge. However, there is limited evidence on the patterns of care received by PLWD across countries and regions. This study aimed to examine the global trends in the absence of care for PLWD with functional limitations and identify potential sociodemographic disparities.

Methods: We used harmonized longitudinal survey data from four Health and Retirement Global Family of Studies that surveyed community-living persons aged 50 and older in the United States, England, 18 European countries and Israel, and China. The analysis focused on persons who reported functional limitations and developed dementia during the study periods (2012-2018). Functional limitations were assessed using activities of daily living (ADL) and instrumental activities of daily living (IADL). Absence of care was evaluated as the proportion of PLWD receiving no care for their ADL/IADL limitations.

Results: At least 20% of PLWD in both developed and developing countries received no care for their functional limitations, and this absence of care remained stable over time. The absence of care was notable for both ADL and IADL limitations, as well as for informal and formal care. Moreover, substantial disparities were observed, with less-educated individuals and those living alone experiencing greater absence of formal and informal care, respectively. These patterns and trends were consistent across all countries and regions studied.

Discussion and Implications: The findings underscore the pressing need to ensure basic care provision for persons with dementia and functional limitations, especially for those who are less educated or living alone. Policymakers should prioritize addressing these disparities and improving care provision for this population worldwide.