Dementia patients died at higher rates during pandemic

Worried older woman
Worried older woman


Medicare beneficiaries with Alzheimer's disease or other types of dementia—particularly nursing home residents and racial minorities—died at higher rates than others during the COVID-19 pandemic, finds a large study published yesterday in JAMA Neurology.

A team led by Dartmouth researchers conducted a retrospective study of 53,640,888 Medicare enrollees 65 years or older enrolled in 100% fee-for-service Medicare Parts A and B from Jan 1, 2019, to Dec 31, 2020. Participants were classified into one of four categories based on Alzheimer's disease and related dementias (ADRD) status and residence in a nursing home.

The study authors noted that excess deaths include both those caused by COVID-19 and those related to pandemic-related disruptions in healthcare services, decreased access to community support services, social isolation and loneliness, and caregiver burnout.

Of the 26,952,752 patients diagnosed as having ADRD in 2019, 63.5% were women, 2.7% were Asian, 9.2% were Black, 5.7% were Hispanic, and 80.7% were White; the composition changed little among the 26,688,136 patients diagnosed in 2020.

Racial minorities, nursing home residents hit hardest

Compared with 2019, the death rate was 12.4% higher among Medicare enrollees without ADRD and 25.7% higher among those with ADRD in 2020. Among nursing home residents without ADRD, the death rate was 24% higher, but it was 33% higher among nursing home residents with ADRD.

ADRD patients saw a 13.3% greater risk of death than non-ADRD patients from March to December 2020. Racial minorities with ADRD had even higher death rates, at 36% for Asian, 36.7% for Black, and 40.1% for Hispanic participants.

The hospital referral region in the lowest quintile for COVID-19 infections in 2020 had no excess deaths in participants without ADRD but an 8.8% higher death rate in community-dwelling enrollees with ADRD and a 14.2% higher rate in nursing home residents with ADRD.

The death rate of ADRD patients in Ridgewood, New Jersey, rose by 104.4%, while it was 110.1% in the Bronx, New York. Philadelphia saw a 62% increase in death rates, despite being in the third lowest quintile for COVID-19 cases.

Although rates of COVID-19 diagnosis from early and late 2020 tripled across all quintiles, death rates among ADRD patients didn't rise across all quintiles of COVID-19 exposure.

Excess deaths among older ADRD patients early in the pandemic likely resulted from many factors, including their vulnerability to severe COVID-19 infections and disruptions in healthcare, the researchers said.

"Because older adults in general and older adults with cognitive impairments are less able to engage effectively with standard telehealth platforms, it is not difficult to imagine how the combination of less effective (or absent) outpatient care and lower inpatient admission rates led to higher mortality," they wrote.

"The elevated mortality risk was found early in the pandemic even in areas with very low COVID-19 infection rates, suggesting that older adults with ADRD, especially those in racial and ethnic minority groups and those living in nursing homes, may be particularly susceptible to changes in health care delivery and nursing home care during the' 'lockdowns' and other restrictions during the pandemic," the authors concluded.

In a Dartmouth news release, lead author Lauren Gilstrap, MD, MPH, said that dementia patients are a unique population. "Our findings also highlight that as a healthcare system we really do have to think about people with cognitive limitations differently, and that more creative solutions are needed to better serve this highly vulnerable segment of society," she said.

Toward fewer health disparities

In a related editorial, JAMA Neurology Viewpoints Editor Elan Guterman, MD, of the University of California at San Francisco, said that the study findings show that preventable death among older dementia patients results from a failure to mitigate the negative effects of COVID-19 on the healthcare system and on daily life.

"Health outcomes among individuals with dementia are closely tied to their base of support because they rely so heavily on social services and informal caregiving to meet their daily needs," she wrote.  

Many populations have borne the brunt of the pandemic, including older non-White people with or without dementia, Guterman noted. "We strive to build a health system that reduces, not enlarges, health disparities," she wrote. "To this end, we must explicitly acknowledge that certain individuals are more susceptible to both the direct and indirect effects of COVID-19 and that improving health in these populations includes preventing infection."

Guterman called for a more holistic approach to reducing disease and death among vulnerable populations. "Policies that fail to repair the anemic social networks and patchy medical care resulting from COVID-19 are undeniably incomplete," she concluded.

"As COVID-19 turns from pandemic to endemic, it is time to consider how we might apply a more nuanced approach to evaluating risks and benefits of our health policy measures to combat this pandemic and others to come."

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