The Mayo Clinic explains frontotemporal dementia as a rare, rapidly progressing neurodegenerative disease most commonly impacting people in their forties and fifties. Frontotemporal dementia—often called “FTD“—causes nerve cells in the brain to lose their ability to function over time. FTD currently affects 50,000 to 60,000 people in the U.S., and patients frequently develop symptoms such as behavioral changes, lapses in judgment, and diminished language skills—all of which tend to appear at a younger age compared to Alzheimer’s disease, says Lealani Mae Y. Acosta, MD, MPH, a board-certified behavioral neurologist and an Associate Professor of Neurology at Vanderbilt University Medical Center. Researchers aren’t sure what causes the disease, but some say there does seem to be a genetic component.

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Frontotemporal dementia is a clinical diagnosis, meaning that doctors identify it based mostly on symptoms rather than biomarkers. Dr. Acosta says because the primary symptoms can be similar to a mental illness, about half of all patients are misdiagnosed with a mental illness. Dr. Acosta shares her tips for recognizing FTD in a loved one, while Deb Scharper, an Iowa mom of two and the wife of a patient with frontotemporal dementia, shares her story with The Healthy @Reader’s Digest.

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Deb’s story

By Deb Scharper, as told to Charlotte Hilton Andersen

Tommy and I were high school sweethearts. For the first half of our marriage, we lived our dream: two kids, a beautiful home, an auto repair business, and a lot of love. All that changed in 2008, when Tommy was just 38 years old.

Mental illness or midlife crisis?

Over the course of several months, Tommy went from being the attentive, loving husband and entrepreneur I knew to displaying some very odd quirks. He completely lost interest in demolition derbies—which had been a lifelong passion—and replaced that with a series of new hobbies. Where before he’d loved spending time with us, he began to isolate himself. He became addicted to computer games and spent hours secluded in his room, playing. And he’d never been a big shopper…but all of a sudden, he was buying things compulsively, mostly related to this new pastime.

His personality changed, too. My husband became paranoid—once even accusing me of trying to poison him. At times, he was depressed and would cry or laugh hysterically at inappropriate moments.

The business he’d taken so much pride in building was now falling apart. It was devastating and heartbreaking. Why was he blowing up our life? Was this a midlife crisis?

Then one day in 2010, I found him staring under the hood of a client’s car with a panicked expression. “I don’t know what to do here,” he whispered. That was when I knew something was seriously wrong. He used to be known as the best mechanic in our town. To be confused simply by looking under a hood? That wasn’t Tommy.

I knew something was wrong, but I had no idea what.

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Misdiagnosed with depression

I took my husband to see multiple doctors and psychiatrists who diagnosed him with severe depression and possibly schizophrenia or bipolar disorder, as well. His dad had recently died of ALS, an incurable degenerative disorder. This had been incredibly traumatic, so it made sense that he’d be having a hard time. These 2 Surprising Traits May Predict ALS, New Research Says

The doctors loaded him up on psychiatric medications…but while he had hours or even days where he seemed like his old self, eventually the madness would come back, turning into a vicious cycle of paranoia and forgetfulness.

One of the worst days of my life

Then, in 2012, he had a devastating mental breakdown where he attempted to hurt himself, the children and me. This was way beyond my ability to handle. I took him to a psychiatric facility where he stayed for two months. There they treated his “depression” with medications and electroconvulsive therapy. Today, knowing all his body went through during that time breaks my heart.

After he came home from the hospital, things did seem a little better. He was stable for about a year before he started to spiral again.

For the next two years, he lost job after job. He developed an extreme addiction to sweets, carrying a half-gallon of chocolate milk with him everywhere he went. There were also bizarre episodes of repetitive behaviors: turning the TV on and off or putting his shoes on and off, over and over again. He completely stopped taking care of himself, refusing to shower or brush his teeth. He’d also do scary things like leave the car running, leave the stove on, or wander away from the home and get lost.

Eventually, he couldn’t be left alone. His mother and I were able to manage it for a time, but it became too much. In 2015 I made the agonizing decision to put him back in the hospital.

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Finally getting an accurate diagnosis

At home, I researched all his symptoms online and finally came across an illness that fit all his symptoms: Pick’s disease (now called frontotemporal dementia, or FTD). It is a rare, rapidly progressing neurodegenerative disease that causes nerve cells in the brain to lose their ability to function over time. FTD is a type of dementia, kind of like Alzheimer’s disease, except it affects much younger people…like Tommy.

Based on his symptoms, a detailed family history, and tests to rule out other diseases, a neurologist eventually confirmed the diagnosis as FTD. We learned there is a genetic link between ALS and FTD—in fact, my father-in-law’s recent passing from ALS became an important key to unlocking Tommy’s correct diagnosis. It was a relief to finally know what was wrong, but it was a terrifying prognosis. Like ALS, there is no cure. I still remember the doctor advising me to get all Tommy’s “affairs in order.”

I went to court to become his legal guardian and after much difficulty, I was able to find him a permanent placement in a skilled nursing facility. It’s about two-and-a-half hours away, and I can visit him and video call whenever we want.

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From wife to caretaker to activist 

One of the cruelest parts of FTD is that while Tommy has almost no memory of recent events, he has a great memory of the distant past. Most of the time he’s locked in the equivalent of a four-year-old’s mind…but during his good moments, it’s beautiful again. Unfortunately, as the disease progresses, those moments of clarity are becoming more and more rare.

I still love Tommy with all my heart. These days I’m more of his caretaker and advocate than his partner. One way I’m coping is by helping to raise awareness of FTD. It takes patients between seven and 20 years to get diagnosed because it’s so unknown, and the symptoms are easily mistaken for mental illness. I won’t ever get my husband back, but at least I can help keep others from suffering as much as we have.

So, my advice? Trust your gut. You know your loved one best—so if a diagnosis feels wrong, keep trying until you get answers.

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How to spot symptoms of FTD

Dr. Acosta says that due to the nature of the illness, patients often can’t really see what is happening to them. This means it’s up to loved ones to be aware.

Here’s how to tell the difference between a mood disorder or mental illness and FTD:

• Symptoms starting during middle age
• No or little history of previous psychiatric illness
• Physical changes like a tremor, or difficulty walking or speaking
• Lapses in memory
• Personality changes
• Family history of early-onset dementia and/or ALS

If you suspect a loved one may have FTD, Dr. Acosta recommends starting by talking to your primary physician and then asking for a referral to a neurologist.

For more information on symptoms, diagnosis, research, and treatment visit LearnFTD.com .

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