Dementia is striking people as young as 30 with a form of the disease called Frontal Lobe Dementia or Frontotemporal Degeneration (FTD) that has become so prevalent, professionals have declared this week National FTD Week.
"Whereas Alzheimer’s disease steals memories, frontotemporal dementia changes personalities and destroys social skills and judgment," FTD advocate at the Memory Clinic, Dr. Tiffany Chow said this week.
FTD represents an estimated 10% to 20% of all dementia cases.
[WATCH the 18-minute documentary on the left side of this page to hear family members speak about loved ones with FTD and to learn if someone you know might suffer undiagnosed FTD.]
FTD collateral damage
"The collateral damage to families is devastating in a different way from Alzheimer’s disease," said Chow at the Chow Lab.
That damage can also be viewed by watching and listening to four family members in the documentary on this page, It Is What It Is It Is What It Is - Frontotemporal Degeneration: Tragic Loss, Abiding Hope, produced by the Association of Frontotemporal Degeneration.
While FTD usually strikes people between 50 - 60 years old, Dr. Geri Hall from the Banner Alzheimer’s Institute in Arizona said this week that FTD can occur in patients as young as 30 to 40 years old and sometimes strikes people even younger than 30.
Unlike Alzheimer’s, that affects the brain's back and side, FTD affects the frontal lobe -- where a person’s behavior, personality and language skills are housed.
A major problem today is that many people with FTD are misdiagnosed, misunderstood and mistreated - for years, sometimes decades before an accurate diagnosis is made.
Depression, anger issues, hostile outbreaks and other abusive behaviors are among diagnoses and descriptors often used, often with little to no treatment help to the victim or family and other caregivers.
"Frontotemporal dementia or degeneration is a non-Alzheimer's cause of dementia, and it is remarkable in its targeting of people in their 50s or 60s, which creates a whole different set of barriers to effective parenting, getting ready for retirement, and professional liability." stated Dr. Chow.
AFTD says, "FTD, also called frontotemporal dementia or frontotemporal lobar degeneration (FTLD), is a disease process that causes a group of brain disorders characterized by changes in behavior and personality, language and/or motor skills, and a deterioration in a person’s ability to function."
A person with FTD typically loses:
- ability to experience empathy, so might seem self-centered,
- language skills, so might seem anti-social,
- ability to reason, so bizarre ideas and behaviors might be observed,
- judgment skills, such as space and timing, so driving is risky and other accidents become more common;
- concentration, so might seem rude when in conversation;
- ability to stop doing things, so obsessive behavior or inability to stop walking or driving in time to avoid accidents might increasingly occur; and perhaps most importantly for caregivers to understand:
- loss of insight - meaning the person does not recognize what is happening related to the loss of abilities, so remains in denial and might blame everyone else and everything else for incidents, accidents and loss of abilities.
Often, a person with FTD is misdiagnosed as being depressed or bi-polar. Because of this, the treatments for these misdiagnoses don’t work and often lead to frustration for the patients and their families.
According to Hall and the medical world, no cure exists for FTD.
For most people with FTD, the brain degeneration is rapid. For some, the capacity to talk completely ends. For some, the ability to swallow can stop.
"On September 30th, we will commemorate the first annual FTD awareness week," Dr. Chow said. "Advocates all over North America will host events over which bread will be broken and the illness can be discussed as 'Food for Thought.'"
[Click here for the region of the country where you live to learn what’s happening this National FTD Week and how to support this campaign.]
The Association for Frontotemporal Degeneration is a key place to turn for accurate information, compassion and hope when lives are touched by frontotemporal degeneration.
Respite Grants are available, according to AFTD.
"AFTD knows how difficult the physical and emotional demands of caregiving can be," the association's website reads. "The Comstock Caregiver Respite Program provides $500 grants to full-time family caregivers for respite. More information and the application form are available here."
For more information on FTD and resources for caregivers, click here.
For immediate help, there is a 24-7 Helpline: 1.800.272.3900.