Life Expectancy With Frontal Lobe Dementia

What is frontal lobe dementia?

The frontal lobes of the brain are located as the name suggests at the front of the brain.  Loosely speaking, it contains what we call the higher functions of the brain. These are the areas of the brain responsible for emotions, understanding, speech; some types of movement, planning and judgement in other words the things which make you a person, and personality.  Like all dementias the people who develop symptoms face a slow loss of self and those who care for them, losing the person they care for by slow degrees.

Frontal lobe dementia is also known as frontotemporal dementia (FTD), or frontotemporal degeneration, it is an overarching term for several categories of a loss of brain function. The changes to the brain are caused by an abnormal build-up of tau proteins, which stop the brain cells from functioning properly, so they die. In frontal lobe dementia parts of the frontal and temporal lobes of the brain are damaged. It was previously known as ‘Pick’s disease’ after the doctor Arnold Pick who identified and first documented the symptoms in a patient over a hundred years’ ago in 1892.

Unlike the most widely diagnosed form of dementia, Alzheimer’s disease, frontal lobe dementia occurs at a much younger age and is partly genetic. That means while there is no certainty that if you have had a close blood relative with FLD you will get it too, your chances of developing it are much higher than for other members of the population.

There are several genes that appear to link with frontal lobe dementia, which ties in with a family history of the disease being the only known risk factor. Approximately 15% of people diagnosed have a family member with the disease. However there is no single cause for the disease.

There are three predominant forms of frontal lobe dementia:

  1. Behavioural variant frontotemporal dementia, affecting approximately two thirds of people with the disease. Besides changes in behaviour, people with this form will find it difficult to control, plan or organise their actions.
  2. Progressive non-fluent aphasia, where the areas controlling speech in the temporal lobe are damaged. People will find it difficult to speak and eventually become mute.
  3. Semantic dementia, where the areas of the temporal lobe responsible for the understanding of language and knowledge are damaged. People will have problems with thinking and language.

In approximately 20% of cases, there is frontotemporal dementia  also associated with motor neurone disease (MND), where in addition the nerve cells that control voluntary movement in the body are destroyed, resulting in people with the disease  gradually losing the ability to move. Professor Steven Hawking is perhaps the most well-known personality to have developed a form of  MND.

Signs and symptoms?

As with other forms of dementia, frontal lobe dementia is progressive, increasingly affecting  behaviour and emotion, language, and ability to think or problem solve. People with the disease may have problems with speaking or understanding speech. Depending upon which parts of the frontal lobe are damaged first they may become very enthusiastic or display apathy.  When the centres responsible for control of decision making are affected first they may also display inappropriate behaviour. There are other causes of these changes which are not FTL dementia related, but these are usually a result of injury or trauma which have affected the same part of the brain, the most well-known  case being Phineas Gage a railway engineer who suffered left frontal lobe damage as a result of being impaled on a spike following an explosion.

NHS Choices lists the following signs for frontotemporal dementia:

  • inappropriate behaviour in public
  • impulsivity
  • loss of inhibitions
  • overeating, a change in food preferences (such as suddenly liking sweet foods), poor table manners
  • neglect of personal hygiene
  • repetitive or obsessional behaviours, such as humming, hand-rubbing and foot-tapping, or complex routines such as walking exactly the same route repetitively
  • seeming more selfish
  • inability to empathise with others, seeming cold and uncaring
  • irritability
  • being tactless or rude
  • being less or more outgoing than in the past
  • being lethargic, lacking enthusiasm
  • depression

Whilst the tau protein build-up and damage seen at post mortem, a magnetic resonance imaging scan (MRI) will show the shrinkage in the lobes to assist diagnosis. Diagnosis is normally made after a series of physical and mental assessments, and diagnostic tests to rule out other causes.

Life expectancy and Treatment

About 10 – 15% of dementia cases are thought to be frontal lobe dementia, the disease affecting 1 in 5000 of the population. However in those under 65 it is believed to be 20 – 50% of cases. Onset of frontal lobe dementia is normally identified when the patient is between 45 and 65 years of age, although it has been seen in people aged 20 to 30 years of age. Only 10% of cases are identified in those 70 years and over.

The disease takes from three to ten years to progress, although there are instances of much shorter or longer times. The average life expectancy of a person diagnosed with frontal lobe dementia is eight years. Approximately 50% of deaths are as a result of pneumonia, following complications associated with inability of the person to move or care for themselves.

As with other forms of dementia there is no current cure for the disease, but there are a range of treatments that can help to manage and deal with the symptoms, and to help people to regain some of their lost functions.

These include drugs such as SSRI antidepressants to help control the symptoms like obsession, over-eating and depression. Antipsychotics may be given to address challenging and inappropriate behaviours. Psychological treatments such as cognitive stimulation and behavioural therapy can help maintain memory function address anxiety. Rehabilitative practices such as, occupational therapy, physiotherapy and speech therapy can help the brain to learn new ways to do things.

At the time of writing, the best hope for a cure or enhanced length of life, lies with stem cell research but this is still at an early stage and a long way from clinical trials.

People with the disease will need a range of services as it progresses and a multi-disciplinary care plan needs to be established soon after diagnosis and revised as the person experiences more symptoms.

The distinction between the various forms of the disease becomes less obvious as the disease progresses. For example all people with the disease will lose some or all of their speech. In the latter stages the symptoms are very similar to those of Alzheimer’s disease and the person will need full time care.

References:

(Source: http://www.nhs.uk/Conditions/frontotemporal-dementia/Pages/Symptoms.aspx)

 

About Alexander Burgemeester

15 Responses to “Life Expectancy With Frontal Lobe Dementia”

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  1. Donna Lee Woerner says:

    My sister was just dx w/ FTD! Her mental state & physical state have deteriorated so rapidly in just the past week!!!! She was discharged from the hosp. and her partner, took her home! She is a fall risk and he won’t cooperate!!!! I don’t know what to do!!!!

  2. Julie Blake says:

    I live with my mother who has just been diagnosed with FTD from a PET scan. Hers started and continues with extreme dizziness, falls and the look of a startled rabbit. Does anyone else have the dizziness which she explains as a foggy brain. I just wish I could get that sorted so that she can at least have a life without having to lay down all the time.
    It is not an easy task being a carer, but I will continue, whilst working full time, to keep her at home and out of aged care.
    It is a constant worry also if this will happen to me.
    All the best to you all. <3

  3. Andrea Haddock says:

    I have just been diagnosed with frontal lobe dementia. I am 59 and a psychologist. I have been deregistered from the NSW council of psychology, and not able to practice any more. I am devastated. Everything I have worked so hard for has been taken away.

  4. Julie Schroeder says:

    Am I missing how we receive answers to our questions expressed on this site? Please let me know. Thank you.

  5. Melissa says:

    My sister was just diagnosed with this, How can I help her? What can I expect to happen with her? Her nerves are affected, and she shakes.

  6. Julie Schroeder says:

    I am a 52 year old female who has been experiencing symptoms of FTD for several years-mainly memory related, I believe. Like a snowball heading down a hill, more and more symptoms have been attaching themselves. I finally saw a neurologist, & in the six weeks or so since my first appointment, after having completed neuro-psych testing and imaging, my ability to function has gotten much more difficult. Just yesterday I was diagnosed with Frontal Temporal Dementia. I am still in shock and numb. We were recently blessed with our first grandchild, have been married 30 years, and have a precious son & daughter in their 20’s who live across the country from us & each other. Sorry…very raw. MY QUESTION IS: when I inquired as to the disease affecting life expectancy, my Dr. said it does not. I continue to read otherwise. Can I know what I ought to expect? If I live until I am 85, even when the snowball is still rolling, I can only pray that my already compromised heart/with pacemaker needed at age 40 or numerous other struggles, will put an end to the snowfall. I never did like blizzards. Thank you.

    • Jana Reed says:

      Did you ever get an answer. My husband has just been diagnosed but I suspect he’s had it for years. Life expectancy seems kind of fuzzy depending on who u ask. I’d like a Definitive answer.
      Hope you are doing well.
      Jana

      • Julie S. says:

        I replied to your comment (Julie S.).
        I cannot locate it. I think I need to locate a well run web-site. My sincerest hope for you to receive proper care for your husband.

        Julie

    • Helena Kennedy says:

      Hi Julie
      So sorry to hear that you are facing this horrible life robbing disease – according to the above article I’m really sorry to say but they state approx 8 years from the diagnosis.

      “The disease takes from three to ten years to progress, although there are instances of much shorter or longer times. The average life expectancy of a person diagnosed with frontal lobe dementia is eight years.”

      spend time with family love much and know you are here for a reason we are not an accident- take care Helena

    • Virginia Watson Shanks says:

      I know this is late but my son-in-laws father just passed away from Pick’s Disease. He lasted about 8 years after diagnosis (although he showed symptoms 2 years prior that were seen as a “midlife crisis “). He was 59 when he died. He lost the ability to speak about 6 months prior to his death. However, unlike Alzheimer’s he never lost his memories and always remembered his children and brother. It was heartbreaking to watch as he declined…but it was so nice that he never lost his life from before his diagnosis. He was never agitated or angry like I have seen others with Alzheimer’s. I will keep you in my prayers for a continued wonderful life!!

  7. Andrew Dennis Harris says:

    I’ve survived twenty nine years since my brain injury in the left frontal lobe, much longer than the doctors said I could. It’s a miracle, no doubt about it. There is hope in Jesus Christ.

  8. Dick insley says:

    Yes the doc told me that this is wrong with me Alli no problem it says I’m seen
    I no longer want to be here any more but stripes

  9. Sharon Hutchison says:

    Mum just been diagnosed with fed pretty scary stuff has had symptoms for a number of years memory very bad now sister and I worried about ourselves too what can we d

    • Shane says:

      I have MS, and also had been struck in the head with a baseball bat, (Skull Fracture) just now my brain is well dying,,,, you are a very kind daughter, wish I had a kind family, two daughters and wife don’t help at ALL, my oldest who is 17, just wants to do everything and anything to stress me, and literally tears me apart, and I’m living with this disability trying to manage both by myself, yes I have no emotions,,,,, we’ll all I can say is just everyday tell her you LOVE her, is worth more than you know, God bless you and your family in Jesus Christ name ONLY‼️

  10. phoee ettenes says:

    Alex, this is the most informative and accurate article i have read on frontal lobe dementia. .

    and this gives us another view on this FDL… my son was diagnose with FDL well still is and the doctors have mixed views on it as he is now 33 years old… This was shown on his MRI ,s so far they are unable to really give a definite opinion. He is also HIV positive.

    He is coping as best as can be.. actually he is the one who send me this article.

    Thanks .

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