Half of older people now die with a dementia diagnosis, up sharply from two decades ago

Summary: Nearly 50% of older people now die with a recorded diagnosis of dementia, up 36% from two decades ago.

Source: University of Michigan

Nearly half of all older people now die with a diagnosis of dementia on their medical records, up 36% from two decades ago, according to a new study.

But this sharp increase may have more to do with better public awareness, more detailed medical records and Medicare billing practices than an actual increase in the condition, the researchers say.

Even so, they note, it offers a chance for more older adults to talk with their families and health care providers ahead of time about the kind of end-of-life care they want. they develop Alzheimer’s disease or some other form of cognitive decline.

The study, published in JAMA Health Forum by a team at the University of Michigan, uses data from 3.5 million people over the age of 67 who died between 2004 and 2017. It focuses on the bills their providers submitted to the traditional Medicare system over the past two last years of the patient’s life.

In 2004, about 35% of these end-of-life billing requests contained at least one mention of dementia, but by 2017 it had risen to over 47%. Even when researchers narrowed it down to patients who had at least two medical claims mentioning dementia, 39% of patients qualified, up from 25% in 2004.

The largest increase in the percentage of people who died with a dementia diagnosis occurred around the time Medicare allowed hospitals, hospices and physicians’ offices to list more diagnoses on their claims.

This shows the hands of an old lady
The largest increase in the percentage of people who died with a dementia diagnosis occurred around the time Medicare allowed hospitals, hospices and physicians’ offices to list more diagnoses on their claims. Image is in public domain

But around the same time, the National Alzheimer’s Plan also came into effect, emphasizing public awareness, quality of care and increased support for patients and their families. caregivers.

The end-of-life care dementia patients received changed somewhat over time, including a drop in the percentage who died in a regular hospital bed or intensive care bed, or who had a feeding tube in the last six months. The percentage of those who received palliative care services increased dramatically, from 36% to almost 63%, although the authors note that this corresponds to a national trend towards more palliative care in the later years. 2010.

“This shows that we still have a long way to go to proactively address end-of-life care preferences with newly diagnosed individuals and their families,” said Julie Bynum, MD, Ph.D., lead author of the study and professor of geriatric medicine at Michigan Medicine.

“Where once the problem may have been underdiagnosed, we can now focus on how we use dementia diagnosis rates in everything from national budget planning to adjusting how Medicare reimburses Medicare Advantage plans.”

About this dementia research news

Author: Press office
Source: University of Michigan
Contact: Press Office – University of Michigan
Picture: Image is in public domain

Original research: Free access.
“Trends in Dementia Diagnosis of Deceased Persons by Medicare in the United States from 2004 to 2017” by Matthew A. Davis et al. JAMA Health Forum


Trends in dementia diagnosis of decedents by Medicare in the United States from 2004 to 2017


Alzheimer’s disease and related dementias (ADRD) have received considerable attention among clinicians, researchers and policy makers in recent years. Despite increased awareness, few studies have documented temporal changes in the documentation of SARD diagnoses despite its new importance for risk adjustment for health plans in Medicare.


To assess trends in the frequency of ADHD diagnoses over the last 2 years of life from 2004 to 2017, and any associated changes in billing practices, characteristics of the population with diagnosed ADHD, and intensity of care end of life.

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Design, framework and participants

This is a serial cross-sectional study of elderly people who died (67 years or older) from 2004 to 2017 using a 20% sample of people who died in action. A diagnosis of DARD in the last 2 years of life was identified using the diagnosis codes from inpatient, professional services, home care, or palliative care claims, requiring the claim algorithm standard which required at least 1 claim and a stricter algorithm which required at least 2 claims. Trends in the diagnosis of MADR in deceased individuals have been used to reduce the influence of new diagnostic technologies for the disease at an early stage. Demographic characteristics, selected comorbidities, place of death, and use of end-of-life health services were also examined. Data was analyzed from July 9, 2020 to May 3, 2021.


Calendar year 2004 to 2017.

Main outcome and measure

ADRD diagnosis within 2 years of death.


Among the 3,515,329 Medicare fee-for-service decedents, after adjusting for age and sex, the percentage of elderly decedents diagnosed with SARD fell from 34.7% in 2004 to 47.2% in 2017. The trend flattened out (25.2% to 39.2%) using a strict SARD definition. There was an inflection in the curve from 2011 to 2013, when additional diagnoses were added to health insurance claims and the National Alzheimer Care Act was enacted. The frequency of ARDD diagnoses increased significantly in cases of hospitalization (49.0% to 67.3%), palliative care (12.2% to 42.0%) and home care (10. 1% to 28.7%). However, individual characteristics, number of visits and hospitalizations were similar throughout the study period, and the intensity of end-of-life care decreased for most measures.

Conclusions and relevance

In this cross-sectional study, almost half of older people who died from Medicare had been diagnosed with SARD at the time of their death. From 2004 to 2017, the percentage of deceased older adults diagnosed with SARD increased significantly before the announcement of the addition of SARD to Medicare’s risk adjustment strategies.

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