Is This the Cruelest Disease?


    What is the number one form of dementia for people under 60?

    What might affect more people than Alzheimer’s?

    It is frontotemporal dementia — or FTD.

    It keeps your memories, but it destroys various centers of the brain.  It might attack speech, or radically change behavior and usually removes all empathy.

    It robs people of their soul, their essence of who they are tragically at a young age.  It can happen from any age from 21-81, yet usually kicks in between 45-60.

    It takes away people’s drive for life.  And people suffering from the disease just don’t care.

    The prognosis for this is death.  There is no cure or treatment.

    How many people are afflicted by this?  No one really knows because many people are mistakenly diagnosed with mental illness.  It takes on average up to four years to get an accurate diagnosis.

    The cost of care is high.  Very few places are set up to take care of middle age people with dementia.

    And people can decline quickly or slowly.  Anywhere from 2-20 years.  Once symptoms start, a person usually has 7-13 years of life expectancy.  Pneumonia is the most common cause of death.

    FTD strikes without warning and with no known cause.  It is thought that it is caused by a series of gene mutations, but that is still not clear.

    It’s not easy to get a diagnosis.  Bizarre behavioral changes often drive family members to desperation and separation before the root cause is discovered.

    Here are the top ten signs of FTD:

    1. Poor judgment
    2. Loss of empathy
    3. Socially inappropriate behavior
    4. Lack of inhibition
    5. Repetitive compulsive behavior
    6. Inability to concentrate or plan
    7. Frequent, abrupt mood changes
    8. Speech difficulties
    9. Problems with balance or movement
    10. Memory loss

    All of these signs tend to drive even those closest to us away.

    FTD, like Alzheimer’s, causes the brain to atrophy and is marked by loss of brain function.

    But it is different because it:

    • Starts at a younger age.
    • The first signs of FTD are not memory loss but behavioral change.
    • Speech and speech recognition problems tend to occur earlier than in Alzheimer’s patients.

    This disease can wreak havoc with family finances.  The bizarre behaviors can cost people their jobs, and in some cases, people afflicted with the disease may spend money on things outside of their normal personality.  And then there is the cost of long-term care.

    FTD actually encompasses six types of diminished brain function which attacks the temporal, or frontal lobes of the brain.

    Interestingly, the disease has been known since 1892, when it was discovered by Arnold Pick and was known as Pick’s disease, a term that is not used because it started getting confused with other more common problems, but the name was similar to Pick.

    If you are concerned that someone you know might be suffering from FTD, here is the official way of diagnosing FTD:

    Three of the following behavioral/cognitive symptoms (A–F) must be present to meet criteria. Ascertainment requires that symptoms be persistent or recurrent, rather than single or rare events.

    1. Early* behavioral disinhibition [one of the following symptoms (A1–A.3) must be present]:

    A.1. Socially inappropriate behavior

    A.2. Loss of manners or decorum

    A.3. Impulsive, rash or careless actions

    1. Early apathy or inertia [one of the following symptoms (B.1–B.2) must be present]:

    B.1. Apathy

    B.2. Inertia

    1. Early loss of sympathy or empathy [one of the following symptoms (C.1–C.2) must be present]:

    C.1. Diminished response to other people’s needs and feelings

    C.2. Diminished social interest, interrelatedness or personal warmth

    1. Early perseverative, stereotyped or compulsive/ritualistic behavior [one of the following symptoms (D.1–D.3) must be present]:

    D.1. Simple repetitive movements

    D.2. Complex, compulsive or ritualistic behaviors

    D.3. Stereotypy of speech

    1. Hyperorality and dietary changes [one of the following symptoms (E.1–E.3) must be present]:

    E.1. Altered food preferences

    E.2. Binge eating, increased consumption of alcohol or cigarettes

    E.3. Oral exploration or consumption of inedible objects

    1. Neuropsychological profile: executive/generation deficits with relative sparing of memory and visuospatial functions [all of the following symptoms (F.1–F.3) must be present]:

    F.1. Deficits in executive tasks

    F.2. Relative sparing of episodic memory

    F.3. Relative sparing of visuospatial skills

    These really complicated symptoms show a truly horrible yet virtually unknown disease which devastates thousands of families a year.