I haven\u2019t been on a three-way call this emotionally taxing since junior high school. James is explaining the situation \u2014 so many dynamics, so much time urgency \u2014 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\u2019s inevitably going to be heartbreak, but is it possible there could also be a silver lining?<\/p>\n
So what is this all about? Well, I\u2019m trying to figure out how to donate my 78-year-old dad\u2019s 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<\/a>. Rachel is someone who works at a crematorium, which, as it turns out, cannot make it work.<\/p>\n Certainly, the demand is there for my dad\u2019s brain. The World Health Organization describes dementia as \u201cone of the greatest health challenges of our generation\u201d and reports that 78 million people will have dementia<\/a> 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 \u2014 this is where me and my family come in \u2014 poor coordination with people suffering from dementia and their caregivers.<\/p>\n My dad hasn\u2019t 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\u2019m free soloing and it\u2019s not going well. I do some research, make some calls, then lose track of it for months on end. I\u2019ve got two kids \u2014 10 and 12 years old \u2014 and there are constantly changing camp pick-up and drop-off times to coordinate with my husband, my mom\u2019s post-op knee replacement appointments to make, and lest you think I\u2019m Mother Teresa, a lot of television to binge and dive-bar beer to drink. Meanwhile my dad is getting worse and worse.<\/p>\n Will I get the administration on this donation done before my dad dies? They don\u2019t call dementia \u201cthe long goodbye\u201d for nothin\u2019, but still, the end is near \u2014 and a mind is a terrible thing to waste.<\/p>\n How does one go about donating a brain?<\/p>\n First things first: Where does one donate a brain?<\/p>\n 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\u2019t be transplanted, so they are handled differently.<\/p>\n 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>, 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.<\/p>\n The NeuroBioBank has partnered with the Brain Donor Project<\/a> 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 \u201cretrieval\u201d (i.e., cutting your person\u2019s brain out before you proceed with burial or cremation rituals). Over the last decade, they\u2019ve pre-registered 30,000 people with all kinds of brains to help advance cutting-edge research.<\/p>\n That\u2019s 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\u2019s brain, because he hasn\u2019t been a part of any of their studies. I lost steam and a few months went by.<\/p>\n 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 \u2014 who has a bit of a Southern lilt to his voice and a can-do attitude.<\/p>\n 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 \u201cbrain retrieval specialist\u201d could come and get the brain. Some crematoriums weren\u2019t willing to do that, so we would need to call them to find one that would, and hopefully wouldn\u2019t charge anyone extra money for it.<\/p>\n 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\u2019m wondering about my dad\u2019s quality of life (Does he know me? Is he content? What still gives him pleasure?) and the next, I\u2019m 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\u2019m hoping my dad\u2019s imminent death can benefit someone else\u2019s expanded knowledge, and then I\u2019m side-barring with Watkins about whether this crematorium is trying to rip me off. It\u2019s jarring, to say the least.<\/p>\n Watkins and I call seven crematoriums together. All of them claim to not have the right facilities to accommodate a brain retrieval. It\u2019s feeling grim, but Watkins stays positive. \u201cI won\u2019t be doing my job until we\u2019ve done absolutely everything we can think of to try to make this happen,\u201d he reassures me.<\/p>\n Hevel says that people like Watkins make all the difference: \u201cIt takes a special person because you are helping someone during what may be one of their darkest times. And you\u2019re dealing with logistics\u2026it takes sensitivity and smarts.\u201d<\/p>\n The other \u201cmiddle man,\u201d as it were, is what they call a \u201cbrain retrieval specialist,\u201d 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<\/a> might come back from the dead for that interview!)<\/p>\n 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.<\/p>\n 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<\/a> it to \u201calmost like looking into outer space.\u201d<\/p>\n 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 \u2014 which, down the line, can lead to gene or cell-based targeting. \u201cWe are getting closer and closer to understanding the genetic underpinnings of everything,\u201d Hevel tells me. \u201cAs weird as this sounds, it\u2019s kind of thrilling.\u201d<\/p>\n It doesn\u2019t sound weird to me. Part of why I want to donate my own dad\u2019s brain is so I can get an accurate diagnosis of what kind of dementia he actually has. My dad\u2019s 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\u2019t opt to get one).<\/p>\n 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\u2019t even on their radar.<\/p>\n That\u2019s 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 \u201cif he hadn\u2019t succumbed to FTD, there were plenty of other pathologies warming up in the bullpen.\u201d<\/p>\n His brain showed evidence of arteriosclerosis, Lewy body dementia, Alzheimer\u2019s, Parkinson\u2019s, and FTD. All these years later \u2014 how does she feel about the choice?<\/p>\n \u201cWith benefit of hindsight, I\u2019m glad I did this,\u201d she said. \u201cIt\u2019s the only meaningful opportunity we get to smack back at that miserable bitch FTD.\u201d<\/p>\n Other top reasons that people register with the Brain Donor Project are serious mental illness, Parkinson\u2019s, and traumatic brain injuries caused by \u2014 and this made me so sad to learn \u2014 intimate partner violence. But scientists desperately need healthy brain donations as well; after all, every experiment needs controls. It\u2019s 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.<\/p>\n The barriers to brain donation<\/p>\n So why don\u2019t more people do it?<\/p>\n Well, there are surely some who are religiously opposed to it or feel strongly about leaving their loved ones\u2019 bodies intact. Others have very obvious reasons to distrust the medical and scientific communities (see: Henrietta Lacks<\/a>).<\/p>\n But I think more people don\u2019t 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.<\/p>\n I asked my friend Tricia Boyle, whose mom died of dementia, if she considered donating her brain and she said: \u201cI\u2019m actually frustrated that no one in my family thought to talk about this, but there was so much I was dealing with. I\u2019m 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!\u201d<\/p>\n No one did. Not Tricia\u2019s mom\u2019s 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\u2019t a centralized system or culture of making sure the people most in touch with those who can donate know it\u2019s an option.<\/p>\n And by the way, mentioning brain donation in your medical directives or your will isn\u2019t the way to go either. Often those documents are not consulted until it\u2019s too late and a brain bank needs to retrieve a brain immediately.<\/p>\n