How Common is Dementia

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chrismaya

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My mom definitely had dementia right around the time some of her ALS symptoms started. How common is this; does anyone know? I thank God for her dementia. She had no clue what was happening to her.
 
Here in Aus, I have been told the Frontal lobe dementia was rare even with MND patients, but is starting to become more prevalent - but then so is the MND. My mum has the dementia - it was worse when she wasn't eating properly because of her swallowing and refused to eat pureed and thickened fluids - she ended up in hospital for over two weeks with malnutrition and dehydration, but now she is home and my father has moved in to look after her, her eating is really good (all pureed and thickened only) and her dementia is not quite as scattered. It is not like normal dementia where they forget who you are etc, it is more she cannot plan ahead - so if she thinks of something she wants it done then and there - and her sentences are muddled, and sometimes she says yes to things,then later asks why you did something even though she said yes to it.
 
Thanks for the info Shelley, that has helped explain my mother alot! Ill be showing dad who has just moved in with her to help him understand too. It makes sense of the last few months where she was refusing alot of helpful equipment and her eating etc. THANKS!
 
Shelley... thanks, you best me to it... we just got home from the ALSA bike ride so I'm just catching up. That article from ALSA was given to us by the neuro at UCSF and it reallly helped put a lot of things in perspective! When you add in the FTD, it's kind of a new beast! It's hard enough when someone is choking and can't eat properly. When they are choking and can't eat properly and don't understand they are sick (FTD patients lack insight into their medical condition) and turn around right after you've had to heimlich them and shove a huge bit of food into their mouth... the stress level gets insane. Anxiety level in FTD patients is high also.. my Glen if left alone after dark is almost guaranteed to leave the house looking for us. We know we have to hide the car keys.. but don't want him walking around alone after dark either.

Gelthling... I understand the refusing equipment thing. Our air hockey table is strewn with "adaptive devices" suggested by the occupational therapist. He tells her "sure, I'll try that" so I order it... and he won't use it. Built up handles for toothbrush and eating utensils, button/zipper hook, etc. Our three successes: levers on the door knobs, a long handled hair comb, and the dysphagia cup he has his milk before bed from. It's a little rough on caregivers, but I know Shelley and I have learned from each other, and if your Dad wants to get ahold of us, please let me know!
 
Gelthling - Katie speaks for us both - yes the FTD add a whole new dimension to this disease. I feel so alone because Jim is not going through the emotional aspect of this disease. In a way it is a blessing - I am glad he doesnot under stand his future with this disease, on the other hand I am left to bare the emotional aspect of this disease. I am so glad I found this forum and Katie- it really helps to have people who truly understand.
 
I don't know if this is called dementia or not, but my husband has what I call "glytches" in his behavior.

Sample: Sunday in church while singing the hymns, he reads the words sometimes backwards.... like this line.... He was supposed to sing- "Sin had left a crimson stain, He washed it white as snow." Rick sang- "Sin had washed a crimson stain, He left it white as snow." He switched the two words... and he did the same, two verses in a row (on the chorus.

He is having a psycho neuro test this week and we'll see how that comes out. If you tell him to go left, he goes right, and things like that.

Anyone else out there like that?
 
Hey Marjorie,

They mischevious side of me says he is having fun. If that is the case, more power to him.

I do not know of a medical term for what you are describing.

I tend to do things bassackwards at times.

Glen
 
Sounds like a possibility. My husband was diagnosed first with FTD then they added PSP and possible MND. The dementia has been a blessing is a way because he doesn't quite grasp the gravity of it all. He has a lot of trouble with "words"... semantic aphasia and does the left right thing clearing meaning to go the right direction but just can't help it. I find the humor helps tremendously... last week I needed to make a u-turn and he told me "you can do a 'wheelie" right here. It was hilarious... but it is also frustrating for him at times. He has just in the last two weeks progressed dramatically both in his communication and motor skills. His right leg is more or less "frozen", left isn't much better and his arms and hands are weak and losing coordination. He needs help for almost every function now. It surprised me how quickly things changed but again I can be thankful for the dementia...
 
Well we know Rick has a MND but " they" keep hedging on the ALS now after living with the diagnosed for two years. No matter what it is named, he certainly has something.

Last summer we were on vacation in Vermont and an issue came up at a gas station. We were at a four corners where there was a light at the intersection and the gas station was on a corner. There were four lanes... and where we planned to go, we had to pull out going left. While he was pumping gas, I had to start with the directions plan so that it would register in the next few minutes. He has trouble sometimes having things sink in, so I started early with the idea that we should exit the gas station behind us so that we would be at the light. It would be too difficult to take the exit in front of us and try to cross all the lanes to go left.

Well, he got back into the car and very slowly headed for the forward exit, as I reminded him we want to go left on the 4-lanes. He sharply yelled at me "I heard you all three times and that's what I am doing!" He put on his right signal and turned right onto the highway.

Then I told him we want to go in the opposite direction, why do you think I wanted you to go out where the light is? He insisted I said "right" not left. I am always the one who is wrong..... there is nothing "wrong" with him!

No, I don't think he is teasing me or making jokes. Would that it were.
 
To not make the previous post too long, I decided to begin a new one to give you another example:

Rick has trouble backing up the car. He never did before this year, but now I urge him to choose places to park where he will be sure he can pull out forwards and not have to back up.

We were parked in a hilly driveway where other cars were also parked to the left of us. We wanted to back out to the right and go up the street to go home. I knew I had to direct him which way to turn the wheel. He started the car and I told him, " Rick, wait a minute now, you have to turn the wheel all the way to the right to back out." "Okay, he said as he turned it all the way to the left and almost hit the car next to us.

Of course I yelled before impact, "Rick, stop!" and he said. "I am just fine, Marjorie, why do you have to yell?" He insisted I told him the wrong way.
 
Rick had a 3 hour test done yesterday at the VA called a neuro-psychic test for cognisence (spelling) According to him he passed it with flying colors. 9/10 of the time he is fine, but has glitches in his behavior that indicates something is going on. I am pretty sure nothing showed in this test since he goes sometimes two weeks or more without a glitch.
 
The last time I was at the Mayo, I read a book that said they might need to reconsider the idea that ALS doesn't have an effect on cognitive functions. If anyone is interested, I can get the exact verbiage when I'm back at the Mayo next week. I'm particularly interested in how dementia relates to ALS because that was one of my original symptoms about a year ago..
 
I have an excellent handout from UCSF ALS clinic that I can share concerning cognitive impairment and frontal temporal lobe dementia in ALS patients. Marjorie, what you are describing is the beginnings. We can trace the beginnings of Glen's episodes back at least 4 years, probably 5. But yeah, at first they were situational or episodic, and thus impossible to catch. Three therapists, a dementia specialist, his primary care doctor and an ENT all missed it. It's very frustrating. Yeah, I'm the target too, and the one that's "wrong." Once the physical symptoms had progressed far enough to get a diagnosis, the rest all seemed to make much more sense.

This is the article (hope it's ok to post the url?) http://www.alsa.org/files/cms/Resources/Cognitive%20Changes(1).pdf
 
Interesting... we just got a notice from UCSF today that they'd like Glen to take part in research on ALS & cognitive changes. I really think this is an area that has been laregely underrated as far as impact on patient and family. I'm definitly going to encourage that they do it. Study involves cognitive exercises/tests for PALS, along with caregiver interview and questionnaire.
 
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