Alzheimer's Disease Progression and the Trajectory of Long-Term Care Use in the United States and Around the World

This supplement analyzes the trajectory of long-term care use by people with Alzheimer’s Disease and related dementias (ADRD) in the United States and other countries, as the disease progresses, and as cognitive abilities decline over time. With prior support from the parent grant, NBER Center for Aging and Health Research, we have convened research teams from 10 countries, who have together compiled country-specific information on their respective long-term care infrastructures, the role of public and private support for care, and differences in the use of formal and informal care. This documentation of the long-term care systems in each country will enable us to evaluate how ADRD and its progression translates into country-specific variations in long-term care service use. Both the completed and proposed research use the Health and Retirement Study (HRS) in the United States and its parallel surveys in other countries. The first activity of the supplement is to measure country specific ADRD diagnoses and prevalence, and the progression of cognitive decline, much as we measured the variations in long-term care systems in our prior work. The HRS and its sister surveys share similar cognitive assessments, including immediate and delayed word recall, serial 7’s (counting backwards from 100 by 7), and definitional questions. We will use scores on these and similar questions to construct indices of cognitive functioning. We will estimate the prevalence of ADRD and cognitive impairment, and its longitudinal progression among those who develop impairments in each country. We will then relate the progression of cognitive ability to other functional disabilities (ADLs and IADLs), and to trajectories of long-term care use. While the supplement supports primarily the US-based analyses, the international comparisons offer an informative perspective on the differences in approaches used. This broader understanding may be particularly valuable, as we face a rapidly growing population of older Americans who suffer from dementia, and who require long-term care.