The diagnosis arrived like a shockwave for Sam Fairbairn, even as she knew, deep down, that something was profoundly wrong. As she sat with her son, Andre, before a consultant neurologist, the reality of his condition began to crystallize: Andre had frontotemporal dementia (FTD). This diagnosis, delivered in , was particularly devastating because of Andre’s age – just 23.
Over the preceding two years, Andre’s behavior had undergone a significant decline. Initially, doctors suspected autism, a possibility that seemed to explain some of his challenges. However, the rapid progression of his symptoms suggested a more complex underlying issue. FTD, unlike Alzheimer’s disease, often manifests initially as changes in personality and behavior, rather than memory loss. It’s a rare form of dementia, typically affecting individuals between the ages of 45 and 65, making Andre’s case exceptionally early onset.
“We were told if he lived to 30, he’d be lucky,” recalls Sam. The news was particularly difficult for Andre to process, as his illness had already begun to impair his understanding. “But I cried, in a daze, heartbroken, trying to process what I’d been told before going home and making the phone calls to tell family that my son Andre had dementia. It felt surreal.”
Andre passed away peacefully in his sleep on , at the age of 24. Sam’s grief remains profound, a mixture of sorrow and disbelief. “I feel I’m on the outside, looking at myself,” she says. “I sit on my phone and go through endless photos and videos of him. I’m overwhelmed.”
Before his death, Sam made the difficult but important decision to donate Andre’s brain for research at Addenbrooke’s Hospital in Cambridge. “If it helps one family get an extra few years with their loved one it will have been worth it,” she explains. This selfless act underscores the family’s hope that Andre’s case can contribute to a better understanding of this rare and devastating disease.
Understanding Frontotemporal Dementia
Frontotemporal dementia is an uncommon form of dementia, affecting approximately one in 20 people diagnosed with dementia. It’s more frequently seen in individuals under 65, but extremely rare in those under 45. As Kirsty Dallison-Perry, head of consultant admiral nurse and health inequality service for Dementia UK, explains, FTD can present with “quite drastic changes in personality including difficulty with decision making, problem solving and behaviors that may appear impulsive, unpredictable or out of character.”
The condition is often caused by a genetic mutation leading to the buildup of abnormal proteins in the brain. In Andre’s case, the dementia was caused by a protein mutation. This buildup damages brain cells, particularly in the frontal and temporal lobes, which control personality, behavior, and language.
Andre’s Journey: From Subtle Changes to Diagnosis
Andre was described as a “very cheeky boy with a brilliant sense of humor” and a “heart of gold.” His initial symptoms began to emerge in , with periods of inappropriate behavior. He was initially diagnosed with autism, which, in retrospect, offered some explanation for his differences. However, alongside these behavioral changes, Andre began experiencing increasing forgetfulness.
“Around the same time, he began forgetting things,” Sam recalls. “He would say he was going to the shop which is walking distance, and an hour later he would be in the city with no idea how to get home.” This disorientation and memory lapses raised concerns, prompting further investigation.
As Andre’s condition worsened, he struggled to maintain employment and required increasing levels of care. He began repeating phrases, adding “then” to the end of sentences, and exhibiting unusual behaviors like consuming multiple cans of soda without realizing it. Sam ultimately made the difficult decision to leave her job to provide full-time care for her son.
The diagnostic process was complex. An MRI scan revealed signs of frontal atrophy, indicating brain shrinkage consistent with dementia. Blood tests and further assessments at the specialist Memory Clinic at Addenbrooke’s Hospital ultimately confirmed the diagnosis of FTD.
Living with Uncertainty and Loss
The family attempted to create positive experiences for Andre, taking him to events he enjoyed, such as car rallies and wrestling matches. They also focused on simple pleasures, like watching his favorite TV show, Peaky Blinders, repeatedly. However, as the disease progressed, Andre’s mobility declined, and he eventually required care in a nursing home.
Sam emphasizes the importance of raising awareness about early-onset dementia and providing support to families affected by the condition. While the future remains uncertain, she hopes to establish a charity dedicated to helping other families navigate the challenges of this devastating illness and create lasting memories with their loved ones. “It made me realise time is precious. I want to make sure his legacy lives on.”
Andre’s story serves as a poignant reminder of the devastating impact of dementia, even in young individuals. His family’s courage in sharing their experience highlights the need for increased research, early diagnosis, and compassionate care for those living with this challenging condition.
