I haven’t been on a three-way call this emotionally taxing since junior high school. James is explaining the situation — so many dynamics, so much time urgency — to Rachel, and asking if she thinks it would be workable, while I just nervously try to follow the conversation, crossing my fingers and toes. There’s inevitably going to be heartbreak, but is it possible there could also be a silver lining?
So what is this all about? Well, I’m trying to figure out how to donate my 78-year-old dad’s brain. He has advanced dementia and is living in a memory care community. James Watkins is the research and study coordinator of the UCLA brain donation program. Rachel is someone who works at a crematorium, which, as it turns out, cannot make it work.
Certainly, the demand is there for my dad’s brain. The World Health Organization describes dementia as “one of the greatest health challenges of our generation” and reports that 78 million people will have dementia by the close of this decade (a 188 percent increase since 2000), for an annual global cost of over $2.8 trillion. And yet, research into what causes it and how to cure it remains stymied by a lack of funding, high-quality data, and — this is where me and my family come in — poor coordination with people suffering from dementia and their caregivers.
My dad hasn’t been a part of any research studies, which I have come to understand is how most people who donate their brains get introduced to the process. Instead, I’m free soloing and it’s not going well. I do some research, make some calls, then lose track of it for months on end. I’ve got two kids — 10 and 12 years old — and there are constantly changing camp pick-up and drop-off times to coordinate with my husband, my mom’s post-op knee replacement appointments to make, and lest you think I’m Mother Teresa, a lot of television to binge and dive-bar beer to drink. Meanwhile my dad is getting worse and worse.
Will I get the administration on this donation done before my dad dies? They don’t call dementia “the long goodbye” for nothin’, but still, the end is near — and a mind is a terrible thing to waste.
How does one go about donating a brain?
First things first: Where does one donate a brain?
Not at the DMV, where you are likely familiar with being asked if you would like to be an organ donor. Brains, unlike livers and lungs and the like, can’t be transplanted, so they are handled differently.
Brains are donated to brain banks dotted all over the country, which have historically been territorial about their recruitment strategies and cache of post-mortem brain tissue. That began to change in 2013 when the National Institutes of Health created the NeuroBioBank, a consortium of sorts between brain banks that wanted to collaborate, rather than compete. The NeuroBioBank now includes Harvard, Mount Sinai in New York, the University of Maryland, the University of Miami in Florida, and UCLA in Southern California, and together, they share the tissue of 18,000 brains.
The NeuroBioBank has partnered with the Brain Donor Project to help potential donors register. Founded in 2016 by Tish Hevel, daughter of a brain donor, the Brain Donor Project has an online form where people like me can register interest and then they do their best to match you with a geographically proximate brain bank that can coordinate what they call “retrieval” (i.e., cutting your person’s brain out before you proceed with burial or cremation rituals). Over the last decade, they’ve pre-registered 30,000 people with all kinds of brains to help advance cutting-edge research.
That’s how I ended up on that three-way call. We live in the Bay Area. Last fall, after a bunch of internet research, emails, and phone calls, I learned that neither UCSF nor Stanford would take my dad’s brain, because he hasn’t been a part of any of their studies. I lost steam and a few months went by.
New year, new me. Get your shit together, Courtney. In January of this year, I landed on the Brain Donor Project website and filled out their standard form. Within hours, I was chatting with Watkins — who has a bit of a Southern lilt to his voice and a can-do attitude.
When I told him that my dad wished to be cremated, he explained that I would need to call them as soon as he died at his facility, get him transported to the crematorium, and then the crematorium would need to hold on to him until a “brain retrieval specialist” could come and get the brain. Some crematoriums weren’t willing to do that, so we would need to call them to find one that would, and hopefully wouldn’t charge anyone extra money for it.
It is in this way that I have so often found myself taking a sharp turn into logistics and finances while doing what is actually pretty existential elder care these last few years. One minute, I’m wondering about my dad’s quality of life (Does he know me? Is he content? What still gives him pleasure?) and the next, I’m discussing whether he requires one or two people to transfer out of his wheelchair (which affects the monthly charges at his memory care community). One minute, I’m hoping my dad’s imminent death can benefit someone else’s expanded knowledge, and then I’m side-barring with Watkins about whether this crematorium is trying to rip me off. It’s jarring, to say the least.
Watkins and I call seven crematoriums together. All of them claim to not have the right facilities to accommodate a brain retrieval. It’s feeling grim, but Watkins stays positive. “I won’t be doing my job until we’ve done absolutely everything we can think of to try to make this happen,” he reassures me.
Hevel says that people like Watkins make all the difference: “It takes a special person because you are helping someone during what may be one of their darkest times. And you’re dealing with logistics…it takes sensitivity and smarts.”
The other “middle man,” as it were, is what they call a “brain retrieval specialist,” who must get to the body within 24 hours of death in order to extract the brain and ship it off to the brain bank. Believe it or not, Hevel reports that this role is often performed by freelancers these days. (Studs Terkel might come back from the dead for that interview!)
But even if we find one, everything needs to align just right, with multiple specialists and institutions all working together, for us to have any chance to pull this off.
What are the brains for?
Looking at real brain tissue under a microscope is a vastly different experience for scientists than using imaging (MRI and PET scans) or blood tests. Dr. Melissa Murray, a professor of neuroscience at Mayo Clinic, compares it to “almost like looking into outer space.”
The stars, in this case, are our cells, and being able to look so closely at them creates an opportunity to identify them more accurately and understand the most vulnerable among them — which, down the line, can lead to gene or cell-based targeting. “We are getting closer and closer to understanding the genetic underpinnings of everything,” Hevel tells me. “As weird as this sounds, it’s kind of thrilling.”
It doesn’t sound weird to me. Part of why I want to donate my own dad’s brain is so I can get an accurate diagnosis of what kind of dementia he actually has. My dad’s gerontologist has said he likely has frontotemporal dementia with Lewy body dimensions, but this was her best guess based on examining him once he was pretty far along in his disease, and with no MRI (my mom and dad didn’t opt to get one).
For many neurological diseases, the only way to know with certainty what someone had is to examine their brain after death. One of the benefits of donating a brain is that you get a neuropathology report that does just that; many people find out that their loved one had diseases that weren’t even on their radar.
That’s what happened to Cathy Butler, whose husband died in 2024 of what she thought at the time was frontotemporal dementia (FTD). What she learned after donating his brain and getting the pathology report was that “if he hadn’t succumbed to FTD, there were plenty of other pathologies warming up in the bullpen.”
His brain showed evidence of arteriosclerosis, Lewy body dementia, Alzheimer’s, Parkinson’s, and FTD. All these years later — how does she feel about the choice?
“With benefit of hindsight, I’m glad I did this,” she said. “It’s the only meaningful opportunity we get to smack back at that miserable bitch FTD.”
Other top reasons that people register with the Brain Donor Project are serious mental illness, Parkinson’s, and traumatic brain injuries caused by — and this made me so sad to learn — intimate partner violence. But scientists desperately need healthy brain donations as well; after all, every experiment needs controls. It’s thrilling that the Brain Donor Project has gotten 30,000 people in the system, but also so inadequate when you consider the scale of these illnesses and their impact on all of us.
The barriers to brain donation
So why don’t more people do it?
Well, there are surely some who are religiously opposed to it or feel strongly about leaving their loved ones’ bodies intact. Others have very obvious reasons to distrust the medical and scientific communities (see: Henrietta Lacks).
But I think more people don’t do it for a very obvious reason that has nothing to do with these oft-cited sacred values: sheer exhaustion. Those most likely to be dealing with the administration of getting a brain donated are burned out and overwhelmed.
I asked my friend Tricia Boyle, whose mom died of dementia, if she considered donating her brain and she said: “I’m actually frustrated that no one in my family thought to talk about this, but there was so much I was dealing with. I’m giving myself grace for not being on top of it, but I am super sad, as my family likely would have easily said yes to it had someone asked!”
No one did. Not Tricia’s mom’s doctors, social workers, hospice workers, anyone at her assisted living community, etc. And this is true in the vast majority of cases. There just isn’t a centralized system or culture of making sure the people most in touch with those who can donate know it’s an option.
And by the way, mentioning brain donation in your medical directives or your will isn’t the way to go either. Often those documents are not consulted until it’s too late and a brain bank needs to retrieve a brain immediately.
Hevel is trying to raise awareness through a variety of creative strategies, including doing partnerships with “death influencers” like @HospiceNurseJulie, who wrote the book Nothing to Fear: Demystifying Death to Live More Fully and has almost 2 million followers on TikTok.
But even if Hevel succeeds in creating the will, there still isn’t much of a way. Take my situation as a case in point. Who wants my dad’s brain to be donated? Me and my family, my friend Watkins and the UCLA brain bank, neuroscientists all over the country, and the leadership at my dad’s memory care community. Who benefits from it happening? The whole society, which knows far too little about one of the most common, demoralizing, and expensive diseases.
Who can make it happen? Despite the heroic efforts of the Brain Donor Project, the infrastructure needed to coordinate all these moving parts just isn’t there to meet the scale of the challenge. Someone needs to be the brains of the operation, so to speak. Without, that the individual family is responsible for duct taping a system together while we’re facing the imminent death of someone we love.
My family brain plan
After six months of research, awkward phone calls, and holding my dad’s hand every week, we had a decent plan. When he died, I was to call Sunset View Cemetery, who would transport his body on ice to their facility. I would also call Watkins, who would rustle up a freelance brain retrieval specialist who could get my dad’s brain out and get it on a plane to LA as fast as possible. The cemetery would charge us a $500 fee for the room where the extraction would take place (the brain bank would pay for $200 of that and we’d have to spring for the other $300). For all this effort we’d get a “football-size” amount of ashes and a pathology report potentially unlocking important genetic information, not to mention the cathartic knowledge that our grand loss had furthered science just a little bit.
Except, like so many best laid plans, it didn’t go that way.
At about 4:45 pm on Thursday, August 13, I noticed my dad’s breathing had significantly changed. I played “Blackbird” by The Beatles off my iPhone for him and then whispered in his ear, “Goodbye dad. I love you forever and ever.”
He took one last gulping breath and was gone.
After crying my eyes out, I called Watkins. He said, “We’re not going to be able to do it.”
Sunset View Cemetery only allows for brain extractions from 9 to 5. Death, as it turns out, doesn’t abide by standard business hours. There was no way to get it to LA within the 16-hour window.
When I spoke to Hevel when I was first trying to figure all this out, she assured me: “It’s a lot of work, but you will find some comfort in knowing that it wasn’t all for naught. It sounds so corny. I told myself, ‘I’m not going to say that to people when it happens to them,’ but everyone who donates actually says that to us. It’s just true. It restores my faith in humanity on the daily.”
If only it didn’t require so much luck and administrative stamina to do the altruistic thing.
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