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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement XC acknowledges research funding from the U.S. National Institute on Aging (R01AG077529; K01AG053408). TMG is supported by P30AG021342 from the U.S. National Institute on Aging. XC and YQ report serving under a contract with the World Bank on leading a report that assesses demand for and supply of home-based support for older adults with disabilities in 31 countries. SC's research was supported by the PENDA, funded by the UK Foreign, Commonwealth and Development Office. The views expressed are those of the authors and not necessarily those of the funders. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or decision to submit the manuscript for publication. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors.