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Frontal Lobe Dementia
islandbound
Posted: Wednesday, January 4, 2012 6:56 PM
Joined: 1/4/2012
Posts: 2


Last April we were told that my father has Frontal Lobe Dementia.   Where can we find information and what to expect.   I live 4.5 hours away and while home for the holidays I saw  how when he gets something on his mind, he will not let it go and he has zero tolerance level.  I know this is hard for my mother and she answers the same question 5 times within 10 min.   I want to help and learn as much as possible, does anyone have any suggestions?

 


Cheryle Gardiner
Posted: Wednesday, January 4, 2012 8:01 PM
Joined: 11/30/2011
Posts: 529


Hi, islandbound, and welcome to the forum. We're glad you found us, although we're sorry for what brings you here. 

For future reference, this board is primarily used by the spouses/partners of people with dementia, and doesn't get as much traffic as the Cargivers Forum just above this one.

To answer your question, this article about FTD is very good: http://www.alz.org/alzheimers_disease_frontotemporal_dementia.asp  We also have several members here with LOs who have FTD and I'm sure they'll be along soon with help and advice.

In the meantime, do come back often to ask questions and just to vent.
JAB
Posted: Thursday, January 5, 2012 1:19 PM
Joined: 11/30/2011
Posts: 740


Hi, islandbound, welcome to the boards.

 

For tons of info, see:

http://www.theaftd.org/

We have many members caring for loved ones with frontotemporal dementia (FTD, aka frontotemporal lobar dementia, FTLD).  So in addition to reading up on the AFTD site, please feel free to join our Caregiver Forum (third forum on the Message Boards index) ... and suggest that your mother join us here on the Spouse/Partner Caregiver Forum, too.


Johanna C.
Posted: Sunday, January 8, 2012 9:53 AM
Joined: 12/9/2011
Posts: 10054


Dear islandbound:  Hello and welcome to the Message Board.  I am an RN whose mother had FrontoTemporal Dementia and whose step-dad has Alzheimer's Disease.

 

Someone once told me that FTD is like Alz's on steroids -  I think that was an apt description.  This is not a sprint, it is a marathon where someone keeps changing the goal line.  There are different types of FTD and symptoms are a bit different between them.  There is Pick's Disease (FTD) and other FTD subtypes.

 

My mother had a non-Pick's FTD.  In FTD, memory is not lost as in Alzheimer's Disease.  In fact, many FTD patients will retain memory right up until the last stage of the disease.

 

Delulsions, (rigid false beliefs) are quite common with FTD and this causes much distress for both the patient and definitely for the family.  My mother became delusion driven with false beliefs about SO many things. 

 

More than anything, FTD is all about behaviors.  They can become very irritable, and are often prone to agitation.  They want what they want when they want it and are very self-obsessed.  There is little to no empathy for others, and this is secondary to the disease impact on the brain.  They have lost the ability for good judgment and reasoning is greatly impaired.

 

It does NOT do any good to argue with them, to point things out to them, etc.  This will only cause further agitation and they will dig their heels in even harder.  We must begin to operate in their universe as they can no longer operate in ours.  Validate feelings such as, "I am so sorry that happened, how awful . . ." or; "I'm sorry you feel that way, that is terrible" or . . . you get the picture.  It is good not to involve them in many things.  To give information will often cause them to become embroiled due to the impact on their brain for processing and reasoning.

 

Often, the use of therapeutic fibs to assist them are a kindness. We don't have to keep shoving truth at them, they don't process it very often; it is okay to use a fiblet to get them to appointments, to calm them, etc.

 

The very, very best thing you can possibly do is to get a specialist in dementia for your father.  This will become more and more crucial as he moves thru his disease.  While our primary MDs are good at many things, they are NOT dementia experts.

 

Some dementia medications used for memory and other symptoms can be contraindicatead with FTD, so having a specialist on the cutting edge is essential in not clouding the situation and in some instances, making the behavioral symptoms even worse.

 

My personal choice both as a professional and as a daughter of an FTD patient was to have a good Neurologist who sees dementia patients as a routine part of his practice - experience with dementia patients is essential.

 

As my mother's condition continued to advance, and as she became delusion driven and her behaviors were dreadful, it was necessary to look at medications.

 

Why?  Well, her quality of life was nil - just think; if they are driving us crazy, imagine how awful it would be to live inside their heads believing all those things - ongoing severe agitaion and horrible delusions - not acceptable to have them have to live like that.  Also, all lesser measures had failed.  Her behaviors were unbelievable.  In such cases, the specialists will usually prescribe a low dose of an antipsychotic.  While this is off  label, it is the only thing that brings relief in such situations.  The two most commonly used are either Seroquel or Risperdal.  My mother received Risperdal and within 24 - 48 hours she was SO much better in symptoms.  Not perfect, but significantly better.  She was fortunate in that she had no side effects, so that was a good thing.

 

Also, "silent" urinary tract infections (those without symptoms) do occur and it will make their symptoms so much worse.  This happens more often with women, but it also happens with men too.

 

Also, right now, try to get an adult child or someone else on all financial accounts along with your Mom.  This becomes tremendously important as things move forward.

 

Because FTD keeps memory pretty much intact but yet their judgment is horribly compromised and they can no long reason appropriately, but they are driven, very often they begin to plunder the bank and finance accounts.  This did happen with my mother and it was a nightmare.  Finally, my step-dad went to the bank with me and my step-brother.  He took Mom off the accounts (without her knowledge) and put us on.  He closed the old accounts and re-opened them without Mom's name; just him and us.

 

This was the best thing we could have done.  Eventually Mom found out and there was a nuclear blast felt across multiple states and she harangued about it for awhile, but eventually that quieted down.

 

By the way, they can choose something to obsess about and harangue about it and focus on it until it is beyond the pale.  But, eventually, they will drop that obsession and often move on to another. As the disease manifests itself, they are often very upset with changes; sometimes ANY kind of change.  Even bringing a new vacuum cleaner or crockpot into the house got my mother unbelievably upset and acting out.  Had to remove the items.

 

Also, they can move back an forth in their condition as though they are on a dimmer switch.  Sometimes Mom seemed to be gaining ground and I'd think, "Oh, she's improving, wonderful."  BUT - there would then be a tremendous fall back into the "bad place" sometimes worse than the first.  I soon learned that there would be no improvement.

 

Do get your loved one set up with a dementia specialist and get all finances and paperwork in order.  Durable Powers of Attorney are really necessary - one for Healthcare and one for Finance.  Your Mom should have someone else on it with her should she become ill or unable to conduct business.  If one wishes, one can consult an Elder Law Attorney.  This specialty is best suited for all the convolutions when dementia is present.

 

Also, it is good to always have a, "Plan B" in mind.  I began to research other types of care including facilities years in advance of need.  However, when things became critical and Mom could no longer live at home, I was able to make plans without undue stress as I already knew what was available.

 

By the way, these advance possible plans are very useful as sometimes changes both in dementia or physical self can be abrupt and one can be caught up short.

 

There is a lot to do to get all the ducks in a row in the beginning, but when you do accomplish that, things will be easier as you move along.

 

AND - by the way, you will probably want to write on the Caregiver's Forum.  There are multiple people there whose loved ones have FTD.

 

There is also an FTD Association - just Google, AFTD and it will get you there.  There is also a 24 Hour Helpline in the Alzheimer's Assn., it can be reached at, (800) 272-3900.  There are "Care Consultants", these are highly educated social workers who specialize in dementia and you can ask to speak to one if your issues is a bit complex.

 

You can reach your local Alz. Assn too; you can find them by going to, www.alz.org/apps/findus.asp

 

I wish you the very best, do know we are here for support and exhange of information and it's a great place to even have a good vent.  It kept me going during the worst of times.

 

Best wishes from one daughter to another,

 

Johanna C.

 

 


islandbound
Posted: Sunday, February 5, 2012 3:34 PM
Joined: 1/4/2012
Posts: 2


Thanks to everyone that has replied to my post.   The information has been very helpful. 

 

Thank you so much, 

 

Rebecca