Written by Ben Freeman
Not all dementia is Alzheimer’s, nor does dementia affect people only later in life.
In his mid-30s, Andy Nissen of Texas began to act with a lack of discipline uncharacteristic for a former member of the U.S. military. He started neglecting his hygiene, forgoing showers and wearing the same clothes for days. He ate sunflower seeds obsessively, to the point where he became allergic. At times he even ignored his young daughter, Athena, instead watching TV all day long.
His wife, Shana, was at wit’s end. She didn’t know whether Andy had depression or some other mental illness. She feared that somehow she was the cause of his strange mental state. “His behaviors were just not him — very out of character,” she said. “I would ask what’s wrong and he would say, ‘I’m perfectly fine,’ like there wasn’t a problem at all.”
Frontotemporal degeneration (FTD) is a progressive and fatal neurological disease that gradually damages the brain’s frontal and temporal lobes. It is characterized by a gradual decline in behavior, language and/or movement.
People with FTD may lose their inhibitions and act in an antisocial manner. Some develop obsessive, repetitive actions. The ability to communicate can be impeded. Once-familiar words lose their meanings and speech can occur in a halting, hesitant tone until muteness sets in. FTD can also affect movement.
Working becomes difficult, then impossible. Eventually, most people with FTD require full-time care.
“I told Andy to go to the doctor. He went on his own,” Shana said. “He came back and said the first doctor told him he was fine — no follow-up necessary, no tests.”
Because many doctors are unfamiliar with the symptoms of FTD, receiving an accurate diagnosis can be a frustrating, multiyear process, full of false starts and dead ends. Compounding these challenges, FTD more often affects younger people. Andy Nissen was just 37 and had visited several doctors when he was diagnosed in 2012 with FTD, after exhibiting symptoms for years. FTD is actually the leading cause of dementia for people aged 40 to 60.
Raising awareness of this under-diagnosed, still misunderstood disease is critical. The country’s leading organization dedicated to addressing FTD, The Association for Frontotemporal Degeneration (AFTD), has made FTD awareness one of its primary missions.
“Too many families receive inaccurate information about their loved ones’ condition,” AFTD Executive Director Susan L-J Dickinson said. “FTD is commonly misidentified as Alzheimer’s, depression or even a midlife crisis. You can’t cope with a disease if you don’t know you have it.”
There is no cure for FTD, and today there are no approved disease-modifying treatments. But organizations like AFTD offer a host of resources and support for people affected, and Dickinson said that hope surrounding this disease is rising.
“In just the last few years, the scientific community has published groundbreaking research on FTD. More people are being effectively diagnosed, more research is being funded and several long-term studies are still ongoing,” she said. Further, she added, “there is increasing consensus that FTD may hold the key to unlocking a cure for a range of neurological diseases, including Alzheimer’s. AFTD is proud to be at the forefront of this work.”
Andy died in 2016. Today, Shana helps to run an FTD support group in San Antonio, Texas, and she and Athena both dedicate themselves to raising awareness of FTD, “so that others don’t feel like they are fighting this disease by themselves.”
For more, visit theaftd.org.