Is my spouse turning into a jerk or is it dementia?

Frontotemporal Dementia & The Jerk Factor

When I say “dementia,” most people think “Alzheimer’s Disease.” The truth is that in people under 65, the more common dementia is “frontotemporal dementia” for FTD. FTD refers to a spectrum of neurodegenerative diseases that include behavioral, motor, and/or speech symptoms. The one I am talking about here is known as behavioral variant FTD because THE CHANGE IN BEHAVIORS IS THE FIRST SIGN, NOT MEMORY LOSS. Although that does come later.

The front part of the brain is the “adult” brain and contains self-awareness and self-monitoring. This is the part of the brain that helps me to eat broccoli instead of M&Ms or get up and go to work when I would rather lay under the covers. The frontal lobe helps me to be a mature and responsible adult, not a jerk. When the frontal lobe starts to shrink, which happens in behavioral FTD, you see the following new behaviors.

Personality Changes

One of the first “jerk behaviors” is more selfishness and lack of social etiquette. A warm, thoughtful, conscientious individual may begin to neglect spousal, parental, and workplace responsibilities. The individual may say or do uncharacteristic things in public. Family, close friends, and coworkers may notice the subtle changes but “brush off” the changes as stress, overload, substance abuse, or perhaps a “mid-life crisis.”

Disinhibition and Impulsivity

These behaviors, coupled with personality changes, may result in behaviors such as gambling, sexual encounters, excessive shopping, shoplifting, and traffic incidents. It is not unusual for a person with bvFTD at this point to be fired from their employment or to have an encounter with law enforcement. In an interesting study by Liljegren et al., 14% persons with bvFTD compared to 2% of persons with Alzheimer ’s disease were found to engage in criminal behavior.

Apathy, Depression, Anxiety

Apathy, or “I don’t care about anyone or anything,” is from the shrinkage of an important piece of the brain known as the anterior cingulate cortex. Without the anterior cingulate cortex, people are incapable of feeling motivation and of performing activities in the correct sequence. The individual will completely lose interest in personal hygiene and will respond with “no” to any questions involving activity.

Hyperorality

When the brakes from the frontal lobe are gone, restraint disappears. Persons with behavioral FTD will constantly eat, especially sweet foods. Excessive smoking and drinking also occur. In my clinical practice, I have observed individuals resume smoking and drinking after stopping both behaviors decades earlier. As the disease progresses, these individuals may attempt to eat inanimate objects.

Utilization and Stereotyped Ritualistic Behaviors

Utilization behavior refers to manipulating any and all objects in the environment or the “busy” person. A person with bvFTD will walk over to the nurses’ station and begin handling telephones, pens, cell phones, and any object within reach. Telling them “no” DOES NOT WORK because this is a compulsive behavior. Stereotyped ritualistic behaviors include repetitive behaviors such as rocking, tongue clicking, or hand tapping. These behaviors can also include vocalizations like whooping, hollering, or grunting.

How Common is Behavioral FTD?

This dementia can show up in people who are in their 30s and 40s, although the majority of the cases show up when people are in their 50s. In fact, FTD is more common than Alzheimer’s Disease for persons younger than 65.  Research shows that the financial costs of caring for someone with FTD is twice as high as caring for a person with Alzheimer’s Disease. In my humble opinion, the psychological and emotional costs are probably much higher, too.

First Behaviors, Then Memory Loss

As the dementia progresses, short-term and long-term memory becomes impaired while apathy, hyperorality, utilization and stereotyped behaviors increase in frequency and magnitude. Functional abilities are lost in the reverse order they were learned. Language also declines; the person will begin to communicate using automatic phrases (for example, “How are you?” “I’m fine,” “Things happen for a reason.”) and then progress to mutism.

How Should Care Partners Handle the Behaviors?

Address the Environment

Because judgment goes before memory, the person with behavioral FTD appears “normal” to others. It is tricky to remove their access to joint checking accounts and other financial resources. However, this step has to be taken. One of the first actions is to remove access to financial records and resources ASAP. This means changing computer passwords and getting a PO box (or having bills and important documents sent to an alternative address).

Get Legal Help ASAP

You will need assistance obtaining the appropriate power of attorney documents. It will be helpful to obtain letters from your lawyers (who will most likely request letters from the neurologist) to your banking institutions instructing them to NOT authorize transactions initiated by the person with behavioral FTD. Credit cards need to be off-limits.

Driving

This is an issue unto itself. I’ve addressed driving in two blogs: here and here.

Ritualistic Stereotypical Behaviors and Utilization Behaviors

Honestly, these two behaviors drive many care partners up the wall. Ritualistic stereotypical behaviors do not really respond to medications. Boredom makes these behaviors worse. Meaningful activities can help reduce the ritualistic behaviors. Exercise also helps and improves sleep. Care partners should provide “safe” articles for handling when faced with utilization behaviors. Examples include bean bags, plastic cups and dishes, plastic keys, and expired or used gift cards (to mimic credit cards). Some families have created a room that is safe and contains objects for manipulation to prevent the person with behavioral FTD from destroying the entire house.

Falls

As the dementia progresses, falls become an issue because the parts of the brain that control voluntary movement start to shrink as well. Removing clutter and throw rugs are good first steps. The individual may benefit from physical therapy. The physical therapist can teach family care partners appropriate exercises to help the person with behavioral FTD maintain as much function as possible.

Additional Resources

This blog addressed the unique behaviors seen in persons with behavioral FTD. I would recommend reading additional blogs to help with memory loss, loss of function, repetitious behavior, resistance, and some of the other “typical” behaviors that feel very atypical to care partners.

There are other blogs specific to FTD: click here.

Image Credit : The Jerk : Universal Pictures

Want more information? I provide monthly webinars and individual coaching for caregivers who would like to learn more about dementia, and how to successfully deal with frustrating or scary behaviors. Click here!
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