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Functional Trajectories at the End of Life for Individuals with Dementia: Final Report

Publication Date

Dementia, including Alzheimer’s disease and related disorders, is a neurocognitive disease affecting an individual’s cognitive function and behavior. Dementia is a leading cause of death and is particularly prevalent at the end of life (EOL) in older adults. However, there is limited knowledge regarding the patterns of decline for adults with dementia, who may also have comorbid terminal conditions. This knowledge gap may prevent providers from offering palliative and hospice services, because they may not be able to identify when a dementia patient has entered the terminal phase of illness. It may also limit patients’ and families’ ability and willingness to access palliative services that can improve and complement EOL care.

For this project, we used a sample of decedents from the 2000-2012 Health and Retirement Study to understand the trajectories of functional decline of older adults with dementia near the EOL, and how these trajectories differ from those of people without dementia. In addition, we examined whether and how these trajectories vary by other patient characteristics such as demographics, comorbidities, and access to caregiving. Overall, the findings from the point-in-time analyses indicated that people with dementia have significantly higher levels of functional impairments than do people without dementia up until the last year of life. However, the functional impairment of people with dementia at 2-4 years before death may look similar to people without dementia in the last 6-12 months before death, after controlling for other characteristics.

This report was prepared under contract #HHSP23320160001I between HHS's ASPE/DALTCP and RTI International. For additional information about this subject, you can visit the DALTCP home page at… or contact the ASPE Project Officer, Helen Lamont, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201;,,

DISCLAIMER: The opinions and views expressed in this report are those of the authors. They do not reflect the views of the Department of Health and Human Services, the contractor or any other funding organization. This report was completed and submitted on May 2019.