COVID-19: Navigating Risk for People with FTD and their Families

COVID-19 Letter from Susan

Dear Friends,

As our understanding of COVID-19 evolves, I wanted to write you to share expert information and guidance, drawing from members of AFTD’s Medical Advisory Council, and from leading scientists and researchers with COVID-19 expertise.

As you may have read recently on AFTD’s website, people diagnosed with dementia have been found to be at greater risk of COVID-19 infection, according to a new study led by researchers at Case Western Reserve University.

In a recent New York Times article about the study, experts suggest potential reasons why people with dementia may be more vulnerable. UCSF’s Dr. Kristine Yaffe cites decreased mobility and muscle tone as factors. And the University of Michigan’s Dr. Kenneth Langa notes the reality that some with dementia “are more dependent on those around them to do the safety stuff, to remember to wear a mask, to keep people away through social distancing.”

Dr. Bradford Dickerson, Director of the Frontotemporal Disorders Unit at Massachusetts General Hospital and Chair Elect of AFTD’s Medical Advisory Council (MAC) agrees, telling us that people living with FTD and other forms of dementia are “substantially more vulnerable than the general population.”

“Based on our own experience caring for people with dementia during the pandemic, I am not at all surprised by the results of this study,” he says. “It’s important that we have this valuable scientific evidence from millions of health care records, so we can further advocate for, and hopefully develop systems to protect, people with FTD and other dementias from infectious diseases and other conditions.”

Dr. Murray Grossman, Director of the Penn FTD Center and fellow MAC member, shares that people diagnosed with bvFTD can be at increased risk of contracting COVID because of “limited inhibitory control”; in addition, they may not understand the need to socially distance. People with primary progressive aphasia may have difficulty with understanding the risks and precautions associated with the virus due to a decline in language capabilities.

Guidance for You and Your Family

With the availability of COVID vaccines beginning to increase across the country, members of AFTD’s Medical Advisory Council and other experts recommend taking advantage of this vital resource.

“The COVID-19 vaccine represents a crucial step in maintaining personal health and getting back to as much of a sense of normalcy as possible, for both care partners and people with FTD,” says AFTD Medical Advisory Council Chair Ian R.A. Mackenzie, M.D., of the University of British Columbia.

AFTD Medical Council Member Dr. Bradley F. Boeve agrees, noting: “Unless there is a medical contraindication—something that would be determined between you and your primary doctor, and it is a very rare circumstance to have a contraindication—every person prioritized by CDC guidelines for age, high risk-medical conditions or other factors should be immunized.”

In a January 25 conversation with Massachusetts General Hospital’s Katie Brandt—co-chair of the NAPA Advisory Council and an AFTD volunteer—Dr. Anthony Fauci talks about the importance of the COVID-19 vaccine for people with dementia.

Dr. Fauci explains that there are “likely not” any additional risk factors for persons with dementia, outside of expected side effects such as inflammation. “There’s very little significant inflammatory response after the first shot, considerably more after the boost” he notes. Nevertheless, he adds, “I wouldn’t hesitate to vaccinate an [individual with dementia] because you’re concerned that the inflammation associated with the vaccine is going to be harmful to them.”

In a February 22 Genetic Alliance webinar Dr. Francis Collins, Director of the National Institutes of Health, shares why it’s critical that individuals living with chronic diseases receive a COVID-19 vaccine, and describes the scientific evidence for the safety and efficacy of the vaccines available today.

While he acknowledges supply and demand challenges to date, Dr. Collins also offers optimism for the summer ahead: “We will by the end of July have 600 million doses combined between Pfizer and Moderna, and that—because it’s a two-dose protocol for both of those—is enough for 300 million people” to receive the COVID vaccine. This represents enough supply for 90% of the U.S. population.

We offer the information above to help you and your family understand the current risks of COVID-19 and how a vaccine can help to address them. If you have questions about whether a COVID-19 vaccine is right for you or a loved one, we encourage you to speak with your primary doctor, or another trusted physician.

I wish you and your family safety, peace, and connection in the time ahead.




Susan L-J Dickinson, MSGC


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