New UsAgainstAlzheimer’s survey results differ significantly from recent national polling on willingness to take COVID-19 vaccine and reveal continued cognitive decline in people living with the disease and increased stress in caregivers amid pandemic

Washington, D.C., (September 28, 2020) – A new UsAgainstAlzheimer’s A-LIST® survey of the Alzheimer’s community shows that 60 percent of survey respondents intend to get a COVID-19 vaccine when it is available – nearly double the percentage of respondents in a recent national survey.

No community is being harder hit by a non-infectious disease in the middle of the COVID-19 global pandemic than Alzheimer’s patients, particularly those living in nursing homes and long-term care facilities. With nearly half of all long-term care facility residents living with Alzheimer’s or another dementia, individuals living with the disease have become one of the groups most disproportionately vulnerable to COVID-19 in the country.

In addition, more people are dying from Alzheimer’s and other forms of dementia during the COVID-19 pandemic, according an analysis by the Washington Post. It found that 134,200 people have died from Alzheimer’s and other forms of dementia since March, an estimated 13,200 more U.S. deaths caused by dementia compared with previous years, according to an analysis of weekly deaths data from the Centers for Disease Control and Prevention.

The disproportionate impact of COVID-19 on people living with Alzheimer’s continues to uniquely affect minority communities as well. The New York Times reported in late May that “[nursing h]omes with a significant number of Black and Latino residents have been twice as likely to be hit by the coronavirus as those where the population is overwhelmingly white.” Not only are these populations disproportionately impacted by Alzheimer’s disease, but they are also dying from COVID-19 at alarming rates.

But doubts about a COVID-19 vaccine remain among the Alzheimer’s community. One in 10 of respondents to the survey, taken September 3-9, said they would not take the vaccine, and 30 percent were unsure. Comments by respondents showed concern that the vaccine was being pushed through clinical trials too quickly, and that they would be more likely to get the vaccine when it had been tested more and had the support of scientists and doctors.

“I would need to be assured that its safety has been verified and that it hasn't been rushed to market for political purposes,” wrote one respondent to the UsAgainstAlzheimer’s survey.

The UsAgainstAlzheimer’s findings stand in stark contrast to a national poll conducted by Yahoo News/YouGov, whose findings were released earlier this month. In that poll, only 32 percent of respondents planned to take a vaccine when one becomes available, illustrating a tremendous gap between those living with the most feared non-infectious disease in modern history versus those who are not.

In addition, ongoing COVID-19 closures and restrictions continue to have a detrimental effect on the memory and behaviors of people living with Alzheimer’s and dementia, including a deleterious effect on caregivers. These findings are consistent with previous UsAgainstAlzheimer’s surveys.

Specifically, two-thirds of caregivers reported seeing memory and behavior declines in their loved ones with Alzheimer’s or another dementia during the pandemic. In addition, nearly half (46 percent) of the surveys 50 patient respondents – those diagnosed with mild cognitive impairment, Alzheimer’s or dementia –said they believe their cognition has declined.

Furthermore, nearly eight in 10 caregivers reported having one or more stress symptoms typically found in people experiencing severe stress, with many reporting heightened stress levels impacting the ability to adequately care for loved ones.

Sixty-nine percent of caregivers with loved ones with Alzheimer’s or another dementia in a long-term care community say they intend to request a COVID-19 vaccine for their loved one once a vaccine is available, citing a need for robust safety and efficacy data first.

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Survey Methodology: The survey, taken September 3-9, 2020 by the UsAgainstAlzheimer’s A-LIST®, had 905 responses overall from people living with Alzheimer’s or another dementia, current and former caregivers, people with a significant likelihood of developing the disease, and those interested in brain health. Of the total respondents, 876 described their status.  Current caregivers were the largest group with 231 responses. Of the 189 caregivers completing the survey, a subset of 29 respondents who said they had a loved one in an assisted living facility. 50 individuals with Alzheimer’s disease or Mild Cognitive Impairment also took the survey. This research is overseen by an Institutional Review Board (IRB.)

The UsAgainstAlzheimer’s COVID-19 survey series is supported in part by the Eisai USA Foundation, naviHealth and Biogen, with research support from Cohen Veterans Bioscience.

About UsAgainstAlzheimer’s

UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease.  We are working to ensure that all communities have their voices heard and get a chance to be brain healthy from the earliest years while building resistance against possible cognitive decline.