ASPE ISSUE BRIEF | 1

January 2020

ASPE ISSUE BRIEF

HHS OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

OFFICE OF DISABILITY, AGING AND LONG-TERM CARE POLICY

FUNCTIONAL TRAJECTORIES AT THE END OF LIFE FOR 

INDIVIDUALS WITH DEMENTIA

BACKGROUND

Dementia, a terminal condition marked by cognitive impairment, affects at least 5.5 million 

Americans. Palliative care offers integrated care for patients with terminal illnesses including 

dementia, with a focus on improving quality of life through symptom management. One way 

Medicare beneficiaries can access palliative care is through the hospice benefit, which provides 

a comprehensive and holistic approach to treatment for patients who are terminally ill with a life 

expectancy of 6 months or less. Despite the potential benefits, health providers may be slow to 

offer the hospice benefit, and patients may be slow to opt for it until they are too near the end of 

life (EOL) to take full advantage of this type of care. For dementia patients, uncertainty around 

how long they may survive with their disease further complicates the difficult decision regarding 

when to focus on symptom relief rather than treatment.

One marker of approaching the EOL is a person’s functional decline, as measured by a 

person’s difficulty with the actions involved in daily self-care and mobility activities (also known 

as activities of daily living, or ADLs). There is growing evidence that functional decline near the 

EOL may differ depending on diagnosis and comorbidities. A better understanding of how

functional decline may be different for people with dementia could help providers and 

policymakers assess whether existing models of care meet the needs of terminally ill people 

with dementia. We sought to understand whether the trajectories of functional status are 

different for older adults with and without dementia near the EOL and whether these trajectories 

vary by other patient characteristics like their comorbidities.

STUDY METHODS

We used data from the 2000-2012 Health and Retirement Study (HRS), a nationally 

representative, longitudinal panel study that interviews participants or their proxy every 2 years. 

Our sample included 5,853 people over the age of 65 who died (“decedents”) during this time. 

We used the last two HRS surveys in decedents’ lives to estimate the effect of dementia on 

functional status in each month in the last 4 years of life.

We measured a person’s level of functional impairment by adding together the number of ADLs 

that the participant reported were difficult to perform (ranging from 0-6). ADLs included bathing, 

dressing, eating, bed transfer, toileting, and continence. An increasing number of ADL 

impairments from one time to the next indicates a person is experiencing a decline in his or her 

functional status. Using survey data, each decedents’ number of ADL impairments was 
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calculated in each of the last two surveys before death. We then constructed models to predict 

ADL impairments in each month in the last 4 years of life if patients did or did not have 

dementia, controlling for other patient characteristics such as demographics, socioeconomic 

status, residential setting, caregiving use, and comorbidities.

FINDINGS

FIGURE 1. Predicted ADL Impairments by Dementia Status

 People with dementia had notably higher and sustained levels of predicted ADL 

impairment for longer periods of time before death compared to people without 

dementia. The predicted levels of ADLs for people with dementia 1-4 years before death 

were as high as predicted levels of ADLs for people without dementia only 6 months 

before death. In other words, people with dementia experience higher levels of difficulty 

with ADLs sooner and for more years in their EOL trajectory than people without 

dementia. 

 Dementia was associated with a slower and more gradual increase in ADL 

impairments in the last 4 years of life, after adjusting for demographic characteristics, 

comorbidities, and use of long-term services and supports. 

 After controlling for comorbidities (including cancer, stroke, obesity, etc.) and other 

characteristics, the adjusted functional status in the last 6 months of life was not 

significantly different between those with or without dementia. 

 Using this model, we found similar predicted ADL impairment (1.9 impairments) at 17 

months before death for those with dementia, and 6 months before death for those with 

no dementia.
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IMPLICATIONS

People with dementia have high and sustained levels of functional impairment several years 

before the end of their life, whereas people without dementia have comparably high functional 

impairment only at the very end of their life (last 6 months). In addition, people with dementia do 

not show a sharp functional decline in the last year of life as observed in patients without 

dementia. Without a clear functional change in the last year of life, accurately forecasting the 

remaining survival time for people with dementia may be challenging for providers, family 

members, and caregivers. Mischaracterizing the EOL timing of patients with dementia based on 

their functional decline alone may fail to recognize the specific care needs and treatments for 

this population in their last years of life. This might include adult day care, home care, and other 

services that people with dementia and their families could benefit from using.

People with dementia do not show a sharp functional decline in the last 

year of life as observed in patients without dementia.

Misinterpreting functional decline in patients with dementia may also affect how providers treat 

patients who have additional comorbidities. Because functional decline in the last months of life 

may be more marked for other terminal conditions, clinicians treating patients with a mix of 

diagnoses, like both cancer and dementia, may be tempted to look at functional status as a 

marker for the last months of life across clinical groups. These findings suggest that functional 

status change alone may not be a good indicator for determining the final phase of illness for 

people with dementia and comorbid conditions.

People with dementia may need a longer period of sustained caregiving 

and more tailored care for their specific needs.

Given these findings, existing models of EOL care may be insufficient and inappropriate to 

serve the longer period of decline typically observed in people with dementia. Multi-year periods 

of functional impairment in patients with dementia look similar to the last months of life for many 

other disease cohorts, highlighting that people with dementia may need a longer period of 

sustained caregiving and more tailored care for their specific needs. Models that offer palliative 

and supportive care at EOL but focus only on the last few months of life may be more effective 

with modifications to support people with dementia and their families.

This Issue Brief was written by Ila H. Broyles, PhD, Amy Huebeler, BS, Ira Dave, MS, Emily Graf, BA, 

Qinghua Li, PhD, Lauren Palmer, PhD, Zhanlian Feng, PhD, and Sarita L. Karon, PhD, for RTI 

International.

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 June 2019.

This brief was prepared by RTI International under contract #HHSP23320160001I with the U.S. 

Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, 

Office of Disability, Aging and Long-Term Care Policy. For additional information about this subject, visit 

the DALTCP home page at https://aspe.hhs.gov/office-disability-aging-and-long-term-care-policy-daltcp or 

contact ASPE Project Officers at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 

Independence Avenue, S.W., Washington, D.C. 20201, Helen.Lamont@hhs.gov.
FUNCTIONAL TRAJECTORIES AT THE END OF LIFE FOR 

INDIVIDUALS WITH DEMENTIA

Reports Available

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

Issue Brief

HTML https://aspe.hhs.gov/basic-report/functional-trajectories-end-lifeindividuals-dementia-issue-brief

PDF https://aspe.hhs.gov/pdf-report/functional-trajectories-end-life-individualsdementia-issue-brief

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

Final Report

HTML https://aspe.hhs.gov/basic-report/functional-trajectories-end-lifeindividuals-dementia-final-report

PDF https://aspe.hhs.gov/pdf-report/functional-trajectories-end-life-individualsdementia-final-report