Facing Frontotemporal Dementia

Your personality has changed. You are usually compassionate and caring towards others. Now, it is hard to relate to others or feel empathy towards them. You could have frontotemporal dementia.

Frontotemporal dementia (also known as Pick’s disease) affects the part of your brain that filters behavior, particularly the deterioration of your brain’s frontal and temporal lobes. Individuals with FTD may no longer be able to feel empathy or sympathy and may no longer recognize what is socially acceptable.

Therefore it is quite common for individuals living with FTD to act in socially inappropriate ways. A formerly quiet and loving individual may begin to direct profanity at family members or insults at strangers when in public.

If not handled appropriately, behaviors can escalate to physical aggression, usually towards the caregiver. As the disease progresses, some individuals with FTD lose their inhibition which can result in sexual behaviors (disrobing in public, making sexual advances towards strangers) that are uncomfortable for those around them.

While these outbursts can be hurtful and upsetting to the caregiver and those to whom the comments are directed, the person with FTD is unaware they are saying or doing anything inappropriate.

FTD tends to strike earlier in life than Alzheimer’s disease, often in the 50s or 60s. Some people with FTD have cognitive impairments along with behavioral changes such as disinhibited or obsessive behaviors, sudden strong political or religious beliefs, or extreme apathy. Others have trouble speaking fluidly and comprehending language.

People with FTD can fall under one of three symptom groups. Two of these are subtypes of primary progressive aphasia (PPA). PPA is a degenerative brain disease. The three common symptom groups are behavior-variant FTD (bvFTD), semantic-variant primary progressive aphasia (svPPA), and nonfluent/agrammatic primary progressive aphasia (nfvPPA).

FTD symptoms may occur with these conditions: FTD-ALS (when FTD is connected to amyotrophic lateral sclerosis) and Parkinsonian-like FTD syndromes (Parkinson’s disease along with progressive supranuclear palsy (PSP) and corticobasal degeneration).

There are 50,000 to 60,000 people with behavior variant frontotemporal dementia and PPA in the United States. The majority of whom are between 45 to 65 years of age. FTD affects males and females equally.

FTD affects your brain’s frontal and temporal lobes in the early and middle stages of the disease. As FTD affects those lobes, you lose certain abilities because neurons in those areas stop working.

Your frontal lobe, located right behind your forehead, is responsible for:

·       Movement

·       Planning and decision-making

·       Judgment and reasoning

·       Social skills

·       Spoken language

·       Knowing what’s appropriate and inappropriate

·       Self-control over what you do and say

Your temporal lobes are on the sides of the brain, immediately below and behind your frontal lobe. It handles:

·       Hearing

·       Understanding spoken language

·       Memory

·       Emotional expression and processing

According to the Cleveland Clinic, FTD happens when neurons, a key type of brain cell, deteriorate. This happens when there is a malfunction in how your body creates certain proteins. Proteins work by their shape. Your cells can’t use proteins if they’re not the right shape. Your cells can’t break down those faulty proteins and get rid of them.

Those misshapen proteins can tangle and clump together, with nowhere to go. These proteins accumulate in and around your neurons, damaging those cells until they don’t work at all. Experts have linked misfolded proteins with FTD and Alzheimer’s disease.

These protein malfunctions occur with certain DNA mutations. Your cells closely follow DNA instructions, so any mutation can cause problems. You can inherit some DNA mutations, which is why 40 percent of FTD cases involve a family history of the disease. Mutations also happen spontaneously, so it doesn’t necessarily have to run in your family.

Two other factors may increase the risk of developing FTD. Head trauma may contribute to developing FTD. Thyroid disease may also be a contributing factor to FTD.

A neurologist typically diagnoses FTD based on your medical history, physical, and neurological examination. She might also run other tests such as computerized tomography (CT) scan, magnetic resonance imaging (MRI) scan, positron emission tomography (PET) scan, lumbar puncture (spinal tap), blood tests and electroencephalography (less common).

There is no cure or specialized treatment for FTD. Your doctor can prescribe antidepressants, which may reduce the behavioral problems associated with FTD. Drugs such as selective serotonin reuptake inhibitors like citalopram (Celexa), paroxetine (Paxil) or sertraline (Zoloft), may be effective in some people. Antipsychotic medication like olanzapine (Zyprexa) or quetiapine (Seroquel) may also work on behavioral problems associated with FTD.

According to the Mayo Clinic, there are some things you can do to reduce unwanted behaviors such as avoiding events or activities that trigger undesirable behavior, removing negative environmental cues like car keys, maintaining a calm environment, providing structured routines, simplifying daily tasks and distracting and redirecting attention from problem behaviors.

Caring for someone with FTD can be stressful. You may benefit from joining a support group where you can learn strategies from others and have a safe place to express how you feel.

It’s important to realize that the person with FTD slowly deteriorates and will require 24/7 care and assistance so they should let their wishes be known as soon as possible.