FTD – Robbing Those Under 60 of Their Very Essence

Often diagnosed as mental illness, this dementia has dramatic consequences on the individual and their family. Frontotemporal dementia targets people ages 40 to 60. Families are not prepared for the costs and burdens that come from this disease.

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FTD – Robbing Those Under 60 of Their Very Essence
5 Min Read March 17th, 2021

Most people think of dementia as something that happens to older adults. That is mostly true. With greater longevity, many more people are being diagnosed with Alzheimer's or other types of dementia. However, this disease is a problem that is not limited to the elderly. In fact, it targets those much younger. 

FTD is short for frontotemporal dementia. It is a group of disorders that damage the frontal and temporal lobes of the brain. The location of this damage will determine the symptoms the person will face. Family can see changes in social behavior, including significant changes in their personality and even a loss of language skills.

The changes can be relatively sudden and dramatic. Some people become socially inappropriate and act like a different person. The family often will not recognize the person's behavior, and sometimes the person does not recognize themselves. They can be impulsive and emotionally indifferent, often losing their jobs and destroying relations before people realize exactly what is happening.

People with FTD Often Lack Understand What is Happening

A recent 60 Minutes segment featured FTD. Dr. Bruce Miller, a specialist in FTD at the University of California, San Francisco, told 60 Minutes that many people get misdiagnosed as suffering from mental illness. He says there may be many more people who suffer from FTD than they know about because of this disease's lack of awareness.  

Dr. Bruce Miller

“When a family sees someone with this illness, they don’t recognize them. This is not the person I married that I love. This is not my father or mother,” Dr. Miller said. 

Miller told 60 Minutes that people with FTD generally don’t understand what has changed. It is also a grim situation. Not only does the person suffer from memory loss and other symptoms of FTD, but the outcome is also always death. He explained that there is no way, at the moment, to slow the progression. A person’s body functions start shutting down, which is the cause of death.

Families Face Enormous Challenges

Before death, there is the care the person requires. The family usually becomes the primary caregiver, and the caregivers suffer as much as patients. They become quickly overwhelmed, attempting to provide the care and take care of other responsibilities. 

Often the person with FTC has a spouse and children. Since they are still in their earning years, the financial costs and burdens are devastating. Since family members are usually financially unprepared and emotionally unprepared to provide this care, at any age, it creates a family crisis. Paid caregivers come into the home to help, and when that becomes not enough, the person must be placed in a long-term care facility. 

The crippling costs of long-term care are huge, and these facilities are not set up well for this type of dementia patient. The cost of care is out of pocket unless the person has Long-Term Care Insurance. The cost of this type of care is often more expensive than normal long-term care services. You can find the current and future cost of long-term care by using the LTC NEWS Cost of Care Calculator

Symptoms of FTD

Frontotemporal Denegration Symptoms

Frontotemporal dementia typically hits people between the ages of 40 and 65. The Mayo Clinic outlines many of the symptoms of FTD:

Behavioral changes

The most common FTD signs include extreme behavior and personality changes. These include:

  • Apathy, which can be mistaken for depression
  • Attempting to eat inedible objects
  • A decline in personal hygiene
  • Inappropriate social behavior
  • Loss of empathy and insensitivity to another's feelings
  • Lack of judgment
  • Loss of inhibition
  • Overeating and other changes in eating habits

Speech and language problems

Many people with FTD find it challenging to find the right words and lose the ability to express their thoughts correctly.

Movement disorders

Some people with FTD have movement issues like those associated with Parkinson's disease or amyotrophic lateral sclerosis (ALS). These problems include inappropriate laughing or crying, tremors, muscle spasms, and weakness. 

"This is as profound as anything that can happen to a human being. It robs us of our very essence, our humanity of who we are," Dr. Miller said of FTD.

Support is available, but there are no cures or treatments. The devastation to families is uncalculatable. Families can find help through The Association for Frontotemporal Degeneration

Care is Not Covered with Traditional Insurance

Dr. Miller hopes for advances in treatment in the next five years. While Alzheimer's and most other forms of dementia impact people age 60 and above, FDT affects those ages 40 to 60. Meanwhile, American families must face the consequences of FTD and the care it requires. In fact, long-term care does happen at all ages must the risk does increase as you get older. Yet, many families are caught off guard when a long-term care situation develops. 

Health insurance, including Medicare and supplements, pay a limited amount of skilled care. Most long-term health care is custodial, which is help with daily living activities or supervision due to cognitive decline. Custodial care is not paid for at all by any insurance outside Long-Term Care Insurance. 

Medicaid requires a person to have little or no savings and income in order to qualify for its long-term care benefit. Since many people don't own Long-Term Care Insurance, Medicaid has become the primary payor of these services.

Many experts suggest people start considering Long-Term Care Insurance in their 40s or 50s when premiums are at the lowest, and their health usually would make them easily eligible for coverage. LTC Insurance is medically underwritten, so someone can't wait until their health changes.

The LTC NEWS The Ultimate Long-Term Care Guide is an excellent place to start your research. The fact is nobody knows when you will need extended care. People require care due to an illness, accident, or the impact of aging. Being prepared will not only preserve your savings and investments but will reduce the stress and burdens otherwise placed on the family members that must deal with the consequences of your future care.

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About the Author

Linda Maxwell is a retired journalist who now focuses on writing about topics that captivate her, such as aging, health, long-term care, and retirement issues. Her aim is to maintain an active and engaged mind, and through her writing, she hopes to help others stay positively engaged with life.

LTC News Contributor Linda Maxwell

Linda Maxwell

Contributor since December 11th, 2017

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