Frontal lobe dementia

[gerilynn18]

After going through test after test they finally decided last year that my 57 yo father must have ALS. But he also has frontal lobe dementia. I was wondering if anyone else has seen this with their relatives who were diagnosed with ALS?

 

[Katie C]

Yes... and it's a very difficult diagnosis. Two of the best sources of information are:

From the National Institute of Health: Frontotemporal Disorders

Whoever your dad's caregiver is.. you or your mom or someone else.. is going to need a lot of support. Start looking for it early as FTD can be VERY difficult to live with. I eventually found a dementia specific daycare center that my husband Glen went to for a few hours three days a week... he enjoyed it and it gave my son and myself a much needed break.

One of the more tricky things you'll face is that the FTD actually makes it difficult to impossible for the person to acknowledge their ALS symptoms. An example: If they choke on food they will continue to eat because they make no connection between eating and choking.

Please look over the information links, and come back to ask any specific questions. Will be thinking good thoughts for you as you start this journey!

 

[abbas child]

Yes, it is common, unfortunately. Look at the bottom of this page at the threads that have popped up, and click on them, and you will see lots. You can also use the search (on the blue bar above, with the word "search" in white)--type "dementia" into the box.

gerilynn, I am so very sorry your father has this double whammy. There are some wonderful caregivers here who can help you. I hope they see this post.

Ann

 

[Katie C]

I also posted a couple of links to some good info... just awaiting moderator clearance.

 

[abbas child]

Katie, I actually did a search using your name, then re-thought that idea, but you are so much help. I'm glad as I can be so see your name come up!

 

[Miss]

Sadly, I think it is much more common than reported.

 

[marheid]

My husband was diagnosed with frontotemporal dementia accompanied by ALS type motor neuron disease at the NIH in 2009 as I posted in the new members forum. It is a terrible combination and although he has had symptoms of the motor neuron side, the cognitive problems of FTD didn't become apparent until around 2003-04. The physical and mental problems are overwhelming but along with these problems are the serious financial difficulties we are now in. Has anyone else experienced this? I can't find anyone who will talk about the financial problems that many patients with FTD end up with.

Thanks for all the good ideas I am reading for dealing with the ALS side of my husband's disease. I'm glad to find a place to receive answers to all my questions - something doctors don't do well often.

 

[Tokahfang]

A recently published study identified frontal lobe type impaired cognition in 38% of the PLSers they tested. It is well known that there is a small predisposition towards FTD from upper motorn neuron diseases as well as ALS, but that percentage was really shocking. It certainly means that there is a lot of undiagnosed impaired cognition in our our community. :/