Brain Donation During the COVID-19 Pandemic

By Annie Krall 

In the past few months, many generous research participants have made the extraordinary gift of donating their brain for research endeavors at the Mesulam Center. We caught up with Miriam Chinkers, research study assistant with the Clinical CORE team, about her experience facilitating brain donation. Here is why her efforts, and that of countless other researchers, family members, and ultimately the donors is making a difference during the COVID-19 pandemic. 

What is your involvement with brain donation? 

All of our research assistants and staff neurologists take two-week rotations to be on-call for brain donations. During that time, we are available to answer 24/7. When someone dies, I communicate with the next of kin to facilitate the completion of the brain donation and to return the participant for final arrangements.

Research staff members have two-week on-call shifts. Can you tell us about a memorable call or shift you have had? 

During most of my brain donation shifts, I’ve had about two people pass away, but there seem to be clusters. Recently there were five deaths on my shift. One night I had back to back calls at 10 p.m. and at midnight, reporting two participants from two different states who had passed away and were committed to brain donation. This happened again two days later!

Why is it so important to have people donate their brain? 

We learn so much from brain donations. If someone was ill, we learn definitively the disease that caused their illness from the brain autopsy report that is generated. We also learn about general cognitive aging and what you expect to find in the brain of a healthy person who did not have dementia. We have SuperAgers who donate their brains. These are people who are not losing their memory after age 80 and it gives us an opportunity to understand how their brains differ from those who experience memory loss. We have years of a person’s cognitive behavioral testing, MRIs, and PET scans which, paired with a brain donation gives you a complete picture on how their brains have been aging and why they differ. Finally, the brain is stored in our brain bank and we can distribute tissue to hundreds of approved investigators conducting research on cognitive aging and dementia. We call it “The gift that keeps giving.”

How has the COVID-19 pandemic changed how brain donations at the Mesulam Center are conducted?  

The main difficulty with coordinating brain donations through the pandemic is that so many facilities that would normally do these procedures for us outside of Chicago are not operating. We have been able to accept every brain donation from participants who have passed away locally thanks to Maggie Flanagan, MD, assistant professor of pathology, and Qinwen Mao, PhD, associate professor of pathology at the Mesulam Center. The pathologists and people in the lab take more safety precautions and they are testing the donors for COVID-19 and treat the procedure differently to prevent any possibility of spread of disease. Most other Alzheimer’s Disease Research Centers funded by the National Institute on Aging who have helped us in the past with brain donation, were not operating during the first few months of the pandemic. It has been challenging in some ways to find different facilities or private pathologists who can help us in other states.

What have you noticed surprises people the most about the brain donation process? 

People are usually surprised at how easy it is for the family members to carry out. It is something they expect to be complex. Some donors are worried that their family may be stressed out at the time of their passing and will have just one more thing to worry about. As far as the family goes, really all they have to do is call our autopsy phone number and let us know that a participant has passed away. We really handle everything from that point on. At their time of loss, it also helps for them to talk with someone who has worked with them in the past and may know the donor.

What was most surprising when it came to facilitating brain donations during a pandemic? 

It is a good example of how important the brain donations process is. They are such huge gifts to our research.