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During the first year of the COVID-19 pandemic, older Americans with dementia faced a dramatically higher risk of infection and death than older Americans without dementia, not only in nursing homes, but also in assisted living facilities and the wider community, recent studies show.

People living with dementia are vulnerable to COVID-19 infection because they tend to have underlying health conditions and rely on caregivers, and they may be less able to follow risk reduction measures such as masking, said Johanna Thunell of the University of Southern California.

“Persons living with dementia are at higher risk of hypertension, diabetes, stroke, COPD, and chronic kidney disease, conditions that we know increase their risk of being hospitalized or dying of COVID-19,” she explained.

“Many of those living in a community setting rely on family and friends for help with everything from paying bills to bathing and eating,” Thunell added. “This reliance on care partners likely precluded many from isolating within their household or family unit, increasing their exposure to COVID-19.”

Thunell is among several researchers supported by the National Institute on Aging who are examining the experiences of people living with dementia during the first years of the pandemic to improve care in future health emergencies.

People With Dementia Were Not More Likely to Be Hospitalized During Pandemic’s First Year

Thunell and colleagues Patricia Ferido and Julie M. Zissimopoulos looked at Americans ages 65 and older living in homes or apartments in the community using nationally representative Medicare beneficiary data.¹ They found that in 2020 and early 2021, older people with dementia living in communities faced nearly three times the risk of dying within 30 days of a COVID-19 diagnosis than older people without dementia, and nearly twice the risk of dying if they were hospitalized with COVID-19.

But despite higher rates of infection and death, most community-dwelling older adults with dementia had similar rates of hospitalization as their peers without dementia. There was one exception—older white adults with dementia living in the community were more likely to be hospitalized than their non-white peers.

Their analysis accounted for differences in age, number of chronic conditions, income, and health care access between rural and urban older adults. They found that whether they had dementia or not, older white people with COVID-19 were more likely to be hospitalized than older Black, Hispanic, and American Indian and Alaska Native people in the first full year of the pandemic. Why?

The differences in hospitalization rates may be explained by individual preferences based on cultural norms or social barriers, but the researchers lacked the data to fully explore this connection, Thunell reported. Other recent research, she noted, shows that older Black adults worried about discrimination in health care settings at the onset of pandemic.²

Thunell’s research team suggested that physicians, caregivers, or non-white people living with dementia themselves may have been more hesitant to go to a hospital at a time when visitors were heavily restricted or banned. Or non-white people with dementia may have had smaller support systems—fewer family members and friends who could care for them at home.

The pandemic highlighted and, in many cases exacerbated, existing health care system inequities, Thunell argued. “Our research demonstrated racial and ethnic differences in seeking health care during the pandemic,” she said. “Understanding why will be key to protecting the health of vulnerable people in future crises.”

Memory Care Units May Have Protected the Health of Residents With Dementia

Another team of researchers—led by Cassandra Hua of Brown University and colleagues at Brown, University of North Carolina at Chapel Hill, and Portland State University—identified excess deaths by comparing deaths from all causes during the pandemic months of 2020 with pre-pandemic trends.³ Residents of assisted living facilities experienced significantly more deaths from all causes at the onset of the COVID-19 pandemic (from March 12, 2020, through December 2020) than in the previous 14 months, and those with dementia experienced significantly more deaths from all causes than those without dementia during the period, they found.

But residents in memory care units within assisted living facilities did not have higher mortality rates from all causes than the overall assisted living population in 2020, suggesting that memory care units may have offered better protection from infection, the researchers wrote. Memory care units are more likely to segregate residents, and often have fewer staff interacting with residents, which may have contributed to infection control, they suggested.

But both assisted living and memory care workers faced shortages of personal protective equipment, such as masks and gloves, because nursing homes received top priority, the researchers reported. Managers also had “difficulty maintaining staffing levels, managing staff burnout, and keeping abreast of rapidly changing policy decisions,” they wrote.

For their study, the research team used a nationally representative sample of 286,000 Medicare recipients in licensed assisted living facilities with 25 or more beds—where about 1 in 3 residents had dementia.

In Residential Care, Summer 2020 Brought High Levels of Infection, Limited Social Contact for People With Dementia

Among older adults living in residential care settings—including nursing homes and both assisted and independent living facilities—COVID-19 infections were dramatically higher and social contact was “much less common” for those with dementia, reported Jennifer Schrack and Abigail Corkum of Johns Hopkins University and Vicki Freedman of the University of Michigan.⁴

People with dementia living in residential care were 12 times more likely to have had COVID-19 than their peers without dementia (see table). These findings are based on an analysis of data from the nationally representative National Health and Aging Trends Study (NHATS) tracking Medicare recipients ages 70 and older during summer 2020.

Table. Older Adults With Dementia Were More Likely to Be Diagnosed or Have Symptoms of COVID-19 Than Peers Without Dementia at Pandemic Onset

Source: Jennifer A. Schrack, Abigail E. Corkum, and Vicki A. Freedman, “COVID-19 Pandemic Experiences of Older Adults With Dementia in Community and Residential Care Settings: Results From a U.S. National Survey,” Alzheimer’s & Dementia 14, no. 1 (2022): e12382.

Among those in residential care, roughly half of older adults with dementia saw their contact with non-resident friends and family drop to less than weekly, compared with only about 20% of those without dementia. This wide difference in social contact likely reflects differences in care settings: People with dementia were more likely to live in facilities that stopped or severely limited outside visitors and required residents to stay in their rooms, while people without dementia tended to reside in independent living facilities with somewhat fewer restrictions, according to the researchers.

However, no matter where they lived, people with dementia “coped with the onset of the pandemic by sleeping more,” the researchers reported. Excessive sleep can be a concern because it has been linked to poor health and may suggest the worsening of some diseases and conditions, the researchers explained. Older Americans with dementia were 2 to 3 times more likely to be sleeping more often than their peers without dementia, they found.

Given the disproportionate impact of COVID-19 mitigation measures on older adults living with dementia in residential care, Schrack, Corkum, and Freedman suggested the need for “alternative strategies that stop short of avoiding contact altogether.” They called for balancing infection prevention and social connection, for example, “distancing during group activities and implementing masking requirements.”

The researchers also documented that many older adults delayed health care visits at the onset of the pandemic. One piece of potentially good news: People with dementia in residential care were less likely to delay health care than their peers living in the community or those in residential care without dementia. Although reasons for this finding were not clear, the research team pointed to the “important role of long-term care staff in keeping residents connected to health care providers.”

Another study also based on the NHATS data showed that early in the pandemic, family and friends providing unpaid help to older adults with dementia took steps to protect them from exposure in both residential care and community settings.⁵ Caregivers limited the number of helpers assisting with more intimate tasks, such as bathing and dressing, with some helpers expanding their care responsibilities and hours, the study found.

Will COVID-19 Accelerate Aging and Cognitive Decline?

Researchers are raising concerns about COVID-19’s impact on health and aging in both the short and long term. Lindsay C. Kobayashi of the University of Michigan and colleagues found evidence of cognitive decline related to the stress of the pandemic. Older adults whose anxiety levels and sense of loneliness were elevated—relative to their own usual levels and to other older adults—reported more difficulties with cognitive function and abilities, they documented.⁶

Kobayashi and colleagues questioned whether such “acute changes in mental health during the pandemic will have long-term implications” for cognitive health, potentially related to the onset of dementia. They cautioned that individuals’ fluctuations in mental health during the COVID-19 pandemic may hasten cognitive decline in old age.

The long-term effects of COVID-19 on children remain to be seen. However, University of Southern California researchers Molly Crimmins Easterlin, Eileen M. Crimmins, and Caleb E. Finch are calling attention to the impact on children born to mothers who contracted COVID-19 during pregnancy, particularly before vaccines became available.⁷ Will those children age faster?

They point to findings from the 1918 influenza pandemic: Compared with their slightly older and younger peers, those born during that pandemic died earlier in adulthood and developed more diabetes, heart disease, and depression in middle age. The research team voiced the possibility that children born during the COVID-19 pandemic will be affected by “exposure to maternal infection and/or the stress of the pandemic environment,” and called for research tracking these children over the long term.

This article reflects research supported by the National Institute on Aging of the National Institutes of Health at the Centers on the Demography and Economics of Aging and Centers on the Demography and Economics of Alzheimer’s Disease/Alzheimer’s Disease and Related Dementias.