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By Jasmine Laws and Dr A. Campbell Sullivan
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Growing up in Bellville, a small town in central Texas, I didn't know any psychologists or certainly any neuropsychologists, who treated conditions including dementia. The field was just something I fell into. During my first master’s degree, I needed a job and started working as a psychometrist, someone trained to administer neuropsychological tests. It turned out to be a good fit.
It just so happened I also trained as a extern at the University of California, San Francisco, and the Memory and Aging Center there was one of the first centers in the world to focus on frontotemporal dementias (FTD), a group of disorders that gradually damage the brain’s frontal and temporal lobes, leading to changes in thinking, behaviors and certain movement.
It was there that I discovered I had a natural ability for working with big personalities—which many of the patients had. In hindsight, I wonder if that was because my family has a lot of big, colorful personalities.
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My dad was raised to be well-heeled and genteel, yet he relished being provocative with humor. His younger sister, my aunt, was the same way.
My dad also proudly described himself as a feminist, and from a very early age he made it clear I could do or become anything I wanted. That confidence in me shaped who I was long before I understood how much his own illness would shape the direction of my career.
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'I Knew Something Was Wrong, But Didn't Know Exactly How The Signs Fit Together'
Around 2003, my dad started to have mobility problems, which we initially attributed to complications following a back surgery. At first he walked with a slight limp and wore a brace, but then progressed to using a cane, forearm crutches, and by 2009, he was essentially wheelchair-bound.
Around 2006, he also started to display behavioral changes. His conversations became increasingly superficial and his sense of humor became more juvenile. I remember one Christmas he picked up his plate at the dinner table and licked it in front of everyone. I was stunned because it was so unlike him.
There were also times when he'd say hurtful things to me. As an only child, I had no siblings to confide in about it and so much of the experience felt very lonely.
It was also during that period when his judgment began to change. He made increasingly poor financial decisions and seemed largely unconcerned that he could no longer afford his lifestyle.
At that point, I didn't know enough to recognize the changes I was seeing were likely related to amyotrophic lateral sclerosis (ALS), a nervous system disease that affects nerve cells in the brain and spinal cord, with FTD. I had evaluated patients with clear behavioral variant FTD, but I hadn't yet worked with anyone who had ALS.
I knew that something was wrong, but I didn't understand how the motor and behavioral symptoms fit together. There just also wasn't as much awareness back then about the overlap between ALS and FTD. In 2011, he passed away at 65 years old.
I was a fellow at Johns Hopkins School of Medicine, in Maryland, at the time, and I structured the remainder of my training on atypical neurodegenerative diseases. After my training, I moved to San Antonio where I helped set up a new clinic.
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'FTD and ALS Are Profoundly Misunderstood'
Over the last 10 years, the clinic I work at has come to focus predominantly on patients with atypical cases and supporting their families. I've come to find that both FTD and ALS are profoundly misunderstood, even within the medical field.
Patients can present with a wide array of changes in personality, judgment, language, motivation and movement, and not always the typical memory loss people associate with dementia.
Because of that, families can spend years trying to understand what's happening, while navigating the repercussions of these diseases entirely on their own.
Some families can really take on the burden and be hard on themselves, saying they should have known sooner or been stronger advocates, and I'll tell them, how could you have known?
I think living through those changes with my own dad made me unusually attuned to shifts in personality, behavior, and relationships. During my training, I found myself gravitating toward patients with behavioral symptoms, personality changes, and complicated family dynamics. I felt comfortable with them, and I understood something about the experience of the family members sitting beside them. Their confusion, frustration, grief, and even their anger was familiar to me.
Then, in 2021, my aunt—my dad's sister—started to have mobility difficulties. We'd just come out of the COVID lockdown and I hadn't seen her in a while, but when she came to my twin girls' first birthday, she had this foot drop and struggled to walk up the stairs in the house. I knew something was wrong.
However, as she'd already been struggling with changes in her judgment, she'd made miscalculations in her finances and no longer had insurance. I felt really helpless at that point, feeling certain something was wrong, while knowing I didn't have the funds myself to help her.
It was incredibly lucky that at the Biggs Institute we have a philanthropic fund for uninsured individuals, and she was eventually accepted on the program. It wasn't enough money to cover the cost of all the care, but it at least got her the diagnosis of familial ALS-FTD caused by the TARDBP gene variant. Variants in the TARDBP gene are rare and account for only two to five percent of familial ALS cases. She was 61 years old at the time.
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'The Hardest Part Wasn't Just Telling Her, It Was Telling Her Daughters'
The day she got her diagnosis, it really hit me. I then knew what we were looking at. I knew how the next 18 to 24 months were going to go.
I had to figure out how I was going to tell her and her daughters. At the time, her twin daughters were only 24; I think that was the hardest thing.
My aunt passed away earlier this year at 62 years old.
We don't have a cure for these diseases, and so I really struggled to decide whether I wanted to know what my dad and aunt's diagnoses meant for me and my own daughters, given that their conditions had a genetic component.
'You Don't Have To Navigate These Diseases Alone'
When it comes to my work now, I think I'm much more empathetic when families grapple with the decision of doing genetic testing for these conditions. Before I'd always thought, well if the gene is in your family, why wouldn't you get tested? But I'd never really sat with that decision myself.
To help us better understand these conditions, I'd encourage patients and families to do what they can to support the research. Nearly everything we know has relied on the patients and families who've contributed their time and biological data for studies.
I was heartened at how important it was to my aunt and her daughters to make the decision to donate her brain for research after her death. I know her daughters now feel a sense of pride because of that decision.
I'm also now much more explicit in my support for families affected by ALS and FTD. There are several non-profit organizations who are doing great work to help these families, and I just want these families to know they don't have to navigate these diseases alone.
A. Campbell Sullivan, 48, is a board-certified clinical neuropsychologist and an associate professor of neurology at UT Health San Antonio’s Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases. She also serves as Clinical Core Director of the South Texas Alzheimer’s Disease Research Center and co-directs the South Texas Frontotemporal Dementia Program. She resides in San Antonio, Texas, and has three daughters aged between 6 and 17. In her free time, she thoroughly enjoys listening to podcasts–usually those of a non-scientific nature.
Contact Newsweek editors on this story: Kara Dolman and Emma Lee-Sang
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