And I’m not talking about getting flowers delivered.
I’m referring to FTD (Frontotemporal Dementia).
The disease begins with a change in personality that’s often seen as volitional. Introverts become extroverts. Once-agreeable employees act rude. Formerly faithful spouses have affairs, and while they acknowledge their transgressions, they are unable to appreciate the implications. Some end up institutionalized because their behavior looks like mental illness. Some are incarcerated when they break the law.
The atypical presentation of Frontotemporal Dementia (or Pick’s Dementia) may resemble a midlife crisis, depression, bi-polar disorder, schizophrenia, or a traumatic brain injury and typically strikes between the ages of 45-65.
Researchers believe that between 30,000 and 50,000 people in the United States have FTD. There is no cure, and the disease leads to death, often within eight years, either from accidents or secondary infections.(From the Portland Press Herald)
Is it an epidemic? Is it a misdiagnosis?
Patients are often diagnosed with depression and advised to take appropriate medication that doesn’t seem to really diminish the crying, overwhelming sadness, and feeling of dread.
In searching for answers, they say they feel like their lives have turned into a “twilight zone” that no doctor or therapist “understands” what’s going on.
And they might be right.
Signs and Symptoms of Frontotemporal Dementia
Each case of FTD is different, but the illness generally becomes more distinguishable from other brain conditions as it progresses. Symptoms may occur in clusters, and some may be more prevalent in early or later stages.
- Low Vitamin D3 levels
- Low testosterone, brain fog etc, and does not respond to treatment.
- There is a theory of correlation between sleep apnea and diminished neurological capacity.
Here is a list of ten signs of FTD:
- Poor judgment
- Loss of empathy
- Socially inappropriate behavior
- Lack of inhibition
- Repetitive compulsive behavior
- Inability to concentrate or plan
- Frequent, abrupt mood changes
- Speech difficulties
- Problems with balance or movement
- Memory loss
It’s possible that the change in behavior was caused by a little-known disease called frontotemporal dementia, a neurological disorder centered in the frontal lobe of the brain, the part responsible for our behavior and emotions.
The symptoms are often wrongly blamed on alcoholism, depression, menopause, mid-life crises, stress, or schizophrenia, and patients can go through years of negative tests for other ailments like cancer, strokes, and syphilis before learning the truth about what is actually wrong.
Scientists have found that 70 percent of frontotemporal dementia patients showed damage to brain cells called von Economo neurons, found in the anterior cingulated cortexes, which are involved in self-awareness and socializing.
Frontotemporal dementia, also called frontotemporal degeneration, refers to a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior, and language. Some forms of the disease also cause movement disorders.
Some lose their inhibitions and moral judgment. Shoplifting and acting out sexually is not uncommon. Many have the apathy and social disconnection that usually go with depression. Often, relatives of patients say doctors dismiss their reports of personality change, but it is real.
The frontal lobes are responsible for helping inhibition and behavior regulation, so people with frontal lobe dementia will often exhibit strange or unusual behaviors and personality changes. In fact, personality changes and behavior problems are hallmarks of the disorder.
This is from Robin Albright about her husband who has been diagnosed with FTD: “For the first half of 2012, my husband Dave, fought what we thought was low testosterone, depression and what I assumed was a big horrible case of mid-life crisis. He acted weird on so many levels. This all began “officially” in February, but now that I understand FTD, I can see signs and symptoms back a few years. In February, Dave seemed distant and had this weird look in his eyes. I noticed that he would stop and stare at himself in the mirror. He stopped talking to me and rarely looked at me unless it was an empty stare. I, like the wife of 32 years I’d always been, began “opening up communication.” I would pry and poke at topics hoping to understand what he was feeling or going through. In years past, this worked but not now. Dave became angry and frustrated. I’d ask what was wrong and he had no answer. I was certain that he must have another woman or was looking. I remember saying, “If you’re not with ME, then who are you with?” We almost divorced, spent that spring going to the general practitioner, a psychiatrist, a psychologist and a marriage counselor trying to cure his “depression” and our supposed marital problems but nothing seemed to help. The worst part of it all was that no one wanted to believe me – or so it felt. I felt incredibly alone.”
“They’re not down, but they just don’t enjoy things as much as they used to,” Dr. Huey said. “There appears to be a dysfunction in the reward circuit, where activities that were rewarding and pleasurable no longer seem to be. These patients lose themselves.”
A professional workup is definitely an important step in addressing the changes.
If you’re in the San Diego area, please call Dr. Douglas Galasko (858-657-8540) at the UCSD Memory Disorders Clinic. He will be able to provide the appropriate work up and has expertise in this area. He will also be able to recommend research opportunities if they are a fit/available.
Physical exam and patient history
Because the first symptoms of FTD are sometimes constitutional, identifying the actual date of onset may require some probing. Suggested questions to ask include: Has there been a change in personality, creativity, emotional attachment to others, drive, organizational skills or social abilities?
You should get a measure of complete blood count, electrolytes, renal, liver and thyroid function and serum B12. All patients diagnosed with FTD should have at least an MRI to look for frontal and anterior temporal atrophy. Other laboratory and imaging tests may be required, including SPECT and PET SCANS.
Unfortunately, FTD has no cure. Current FTD treatments focus on easing symptoms but cannot slow the disease’s progress. Physicians may prescribe antidepressant or antipsychotic drugs to combat behavioral symptoms. Patients suffering from language issues may benefit from speech therapy.
The next time you think your spouse might be suffering from a midlife crisis, take that extra step and have a complete neurological exam. It might just be a brain disorder and not simply bad behavior.