“When it comes to the vaccine, of course, there’s a lot of different opinions. But part of the thing that a family should weigh is the vulnerability of their loved one,” VanVlymen said. “So they’re trying to decide, do I do it? Do it not do it? I think having the data where they know that if you have dementia that you’re far more likely to get it, then it might make more sense to move forward with it to protect the person you’re caring for.”
John Lovelace, who is living with Alzheimer’s in Greene County, made the decision to get the vaccine and is signed up on a waitlist with the public health department. His wife Jennifer said they also started to look to see if other providers have appointments.
“I’m really hopeful that I can get it,” John said.
While waiting, John said that they, like others, are trying to protect themselves as much as they can. Jennifer said that before the pandemic they were very social and active, but that’s been more of a challenge now.
Jennifer said she had just read about how people living with Alzheimer’s might not have as good of a recovery as someone without Alzheimer’s, so the vaccine is important.
“So my suggestion is really getting the word out that it’s so important. We get a flu shot every year to prevent getting sick from the flu, it seems like it would be obvious that you would want to get yourself vaccinated to prevent contracting the virus,” Lovelace said.
Some people living with dementia might not be able to provide consent for a vaccine. The Alzheimer’s Association advises that consent for the coronavirus vaccine should be considered in the same manner as other vaccines and health care decisions. If a resident cannot consent, health care providers will talk to the individual’s dedicated power of attorney or other determined family member.
The study led by Case Western Reserve University researchers reviewed electronic health records of 61.9 million U.S. adults and found the risk of contracting COVID-19 was twice as high for patients with dementia than for those without it.
Among those with dementia, Black people had close to three times the risk of being infected with COVID-19 as white people did. Black people are already diagnosed with Alzheimer’s and other dementias more frequently than white people.
“So not only are they more likely to have Alzheimer’s, now they’re even more likely to be impacted by COVID,” VanVlymen said.
In addition, patients with dementia who contracted COVID-19 had significantly worse outcomes in terms of hospitalizations and deaths than those who had COVID-19 but not dementia.
The study was published Feb. 9 by the peer-reviewed Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association and highlights the need to protect people with dementia—particularly African Americans—as part of the strategy to control the pandemic.
VanVlymen said we still need more data on why the risk is higher, but it could reflect the relationship between Alzheimer’s and heart conditions, diabetes and other health risk factors.
Also, he said about 70% of people with Alzheimer’s are living at home and this could also reflect caregiver exposure and whether caregivers either follow CDC guidelines or have the resources to follow CDC guidelines. Black people are also more likely to live in multi-generational homes and work in jobs that come with more exposure.
Researchers wrote they hypothesized the risk of COVID-19 would be greater for patients with dementia for several reasons. For example, people with dementia may be more susceptible to contracting COVID-19 because of blood-brain barrier damage that can allow certain viruses and bacteria to reach the brain more easily.
In addition, dementia may interfere with a person’s ability to wear a mask, physically distance from others or frequently clean their hands.
VanVlymen said Alzheimer’s is already an isolating disease for people living with it and their caregivers and the pandemic made that isolation worse, taking away some options for support.
The association has a phone support group and he said “we have caregivers actually doing phone calls in their cars in a garage or in closets or simply not joining because they don’t want to talk around their loved one. But they know they need support.”
“We always suggested that they get away and take a break, and sometimes now that’s not possible. So we’re wearing out a lot of caregivers right now,” he said.
How to get help
Alzheimer’s Association offers free caregiver support groups, education programs, and care consultations. These services are available by phone or online during the COVID-19 pandemic. Call their Helpline at 800-272-3900.