I have been out of town, and don't have a laptop, so I have missed several days of contact here. Hope everyone is hanging in there, as I am trying to do. As if it isn't enough at home, my son had an accident and had to have a "facial reconstruction", my 85 year old father was in the hospital, my daughter is having a crisis of her own with a horrible incomprehensible crime against her children by a family member, and me trying to hold it all together for all of them...okay I have vented! Now, I just received the report from the Alzheimer's center, and it makes very little sense to me. I was wondering if anyone knows what these tests are and can help me make sense of this report...I'll quote the Summary of results paragraph, some in my own words. " He scored 29/30 on the MMSE, and 32/33 on the Blessed Dementia Scale, missing one point on both tests in orientation. Performance on a third global cognitive measure designed to tease out patterns of diminished neurocognitive functioning indicate mild impairment in memory. His scores declined in the areas of orientation, mental problem solving, and judgment compared to last year, but he still achieved scores within the average age". (Now to me this all sounds like a pretty good report) The report continues: "On a nine-word list learning/memory task, he achieved a similar score as last year of 1.5 standard deviations below the mean for his age and education when asked to recall the learning list after a delay and distractions. Executive skills remain quite severely impaired: he made several errors on the Trails task, and he had trouble shifting mental sets on the Color Word interface test, showing deficits cognitive flexibility and his ability to multi-task. He demonstrated phonemic errors when attempting to learn a four-word list, giving subtle evidence of language changes. Assessment: Despite his relatively good performance on the cognitive testing, he has clearly declined over the past year, to the extent that he can no longer live without help and oversight. He has declined to the extent that he no longer meets the criteria for MCI, and now meets criteria for dementia. The etiology is most likely Alzheimer's disease although he does has a frontal flavor". If anyone has any info just to help me understand some of this, I would appreciate it. I do understand some of it, but just thought this would be the place to get further understanding as so many of you have much more knowledge than I...THANKS! Linda
I used to do language testing, so I am familiar with all of this language, and generally have no problem reading or interpreting Sid's tests. Please remember, I am giving you an opinion based upon my professional experience, but I am not giving professional advice or a professional interpretation.
Your husband was at the MCI - Mild Cognitively Impaired stage when previously tested. He has advanced into dementia. The TYPE of dementia is probably Alzheimer's Disease, BUT a lot of his frontal lobe functions are affected, so he could have Frontal Lobe Dementia, or as in Sid's case, his Alzheimer's Disease may be affecting the frontal lobe more prominently than the other areas of the brain.
His intellectual functioning is still within the low average range, his abilities are declining, and his executive functioning is seriously impaired. That means - while he may still KNOW certain things, he is having difficulty USING his knowledge and intelligence to accomplish tasks, problems using judgment, reasoning, and planning.
He is having difficulty with cognitive flexibility, which means that he understands one concrete way of doing something or interpreting information. He can't switch gears and think another way. That brings up the issue of arguing with him or trying to change his mind. If he says the sky is green, don't argue with him. Agree that it is green. He can't change; he can't be reasoned with. We all go through this with our spouses.
The phonemic errors mean that if he was asked to learn four words such as - grump, rattle, tooth, and pop, he may repeat them as grunt, battle, truth, and top. This illustrates that, as the report said, there is "subtle evidence of language changes."
The "frontal flavor" mentioned in the assessment means that his frontal lobe functioning - reasoning, impulse control, executive functioning, problems with language - is more affected than the memory. The short - term memory is the first to go in Alzheimer's Disease, but is affected later in FTD.
Oh wow Joan, thank you so much, this was like a foreign language to me and I just needed to understand better. Thank you too for your time and attention to this site...you have changed so many lives for the better! Hugs, Linda
Joan is a pro. I'm not, but I like knowing what these tests and scales really am, so I checked them out.
It looks like the kind of MMSE he took was a 50 point test. He got 29/30 points correct out of 50.
I looked up the Blessed Dementia Scale on the Internet and it looks like the higher the score, the worse the dementia on that one. Look here for what is on that "test"
From the language the doctor used I'd suggest you have a look at the Stages of Alzheimer's disease. I think your husband is probably an early 5 if the doctor thinks "he can no longer live without help and oversight". Look here for more information: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
Something interesting from the pdf on the Blessed Dementia Scale. Until 11 days ago my husband took regular 2 hour walks and always came home OK. I don't know if the walks have permanently stopped at this time. But he ALWAYS took the same route and that may be why he always came home OK. On the second page of the pdf they explain that dementia patients sometimes do this. It is the first time I've seen any explanation of why he was able to take the walks safely.
Starling, I can't find that explanation on the second page.
But if I understand you correctly, my husband does the same thing on a bike. (I am almost always with him, but he goes on ahead and pays very little attention to how far behind I am. ) As long as we stick to the same five or six routes to his favorite restaurants, aunt's nursing home, the garden center, etc. he is fine and knows the way. I can even stop off to do an errand, and trust him to get home OK. But deviate from the path, and he's lost.
I have noticed on the last four neuropsychological tests, they have commented that he needed oversight. In the earlier stage, I disagree. That is much easier said than done, and in the mild stage, I look back now and believe he would have been ok alone for periods of time. (Not all week, but for 6-8 hours). I wonder sometimes if those comments are just routine. That being said because the wording is so close to the same on so many reports, I tend to wonder if they are not read by a computer and the results are partly the computer's words. (The same way EKG's have printed "Suggested Diagnosis" on the top that doctors tend to just ignore.
One important fact about testing people - some people test far better than they function. Other people function far better than they test. The evaluator doesn't know the person they are testing, so when they write the report, they write it based upon the test results. I was in a state of shock 3 years ago, when the neuropsychologist who tested Sid, recommended that he not drive because his memory was so bad, and he might get lost. Sid has always had an excellent sense of direction, and at that time, he hadn't lost a bit of that ability. But the neuropsych didn't know Sid, and he didn't know about his sense of direction. He was basing his opinion purely on the test results. It is important to thoroughly interview the caregiver, who knows what the person is capable of doing (and not doing).
Conversely, when I noticed that his memory and judgment were seriously affecting his driving (still had good sense of direction), I insisted he stop driving, even though he passed the driving evaluation.
Joan, that is so interesting...re: sid's sense of direction. I have known people (my Mother especially!) who could get lost in a department store and have no idea where she was or which door she came in. I have always had a sense of direction, which way was North or South. It's easy to recall the door we entered in say: Dillard's...and where the car was parked in a parking lot. I think it's something one is born with, and doubt if it can be "learned".
Oh, don't even mention the car in the parking lot. I spend half my time looking for my car. I have came out the wrong door, walked the whole lot and deciding someone had stole it - you name it I've done it. But, really I am not as bad as I used to be - so that's something. I usually make a mental note now - If I don't forget. (sign)
If you have a car alarm, you can always walk around the parking lot pushing either the lock/unlock buttons looking for the lights flashing or push the alarm/panic button until it goes off. A couple weeks ago at the mall I helped a lady with small children find her car this way.
Of course, you have to hope it is your car that goes off. They say you can walk thru a parking lot full of cars and find at least one other that will open with your remote. We had this happen one time in a large church parking lot - and the other car was only about 5 away from us.
mimi - my husband's neuropsych test result also said 'dementia of the Alzheimer type' but possible frontal-temporal lobe dementia based on the MRI showing frontal lobe shrinkage. BUT - the neurologist said nothing about that possibility.
My faith in that report is diminished due to the errs I found in it. I had most corrected that I found but I was re-reading it the other day and saw where he says my husband has a long history of hypertension. He has never had BP except when he first goes into the doctors office. After some chatting it goes back to the 118/75 range. He comment to the errs: 'that is what happens when doing more than one at a time.' Hope yours gave you more confidence. Art does worse on testing - under stress and his memory goes out the door!
When I did drive I wanted "Left" and "Right" directions and landmarks--go past the McD and turn Right on... Also, "If you pass the Cosmopolitan Bank you're too far." North/South s confuse me.
But even now, I can be in a totally unfamiliar area, and direct the driver to my home.
When giving directions I can give Left/Rights and North/Souths, bui still give descriptions and landmarks as well.
When I drove,finding my car in parking lot not too hard--Noted door went in--came out same--Butterscotch NOVA not hard to spot. Later Pickups in the handicapper parking easy to find--not common.
Finding your car in the parking lot is, according to experts, one of the most complicated jobs your brain has to do. If you go to the same place several ties a week and park in a different place each time, it involves unlearning and learning. I solve the problem by choosing a place I like and sticking to it every time.
About 15 years ago we went to Myrtle Beach, SC. There is a large park called Broadway at the Beach with many attractions, restaurants, theaters, etc. We stayed there for several hours, having dinner and seeing a movie. When we left the movie it was dark and DH could not find our car. He insisted it was close to the theater, I said it was on the other side of the park,near the restaurant where we had eaten. We even had security helping us. Finally, we found the car near where I thought it would be. This was before other symptoms of AD surfaced. As I look back now, I see lots of situations that were indications of things to come. I can't think anything we could have done if we had known then what we know now.
maryd, that's something I've wondered about. If we had a diagnosis sooner and started Aricept and Namenda several years before, would it have made a difference?
Then there was the time, long before dx, when I stood beside our car on the lowest level of an underground parking lot for almost an hour after a concert in downtown Rotterdam, waiting for dh to find me and the car. He had left during the applause to be first in line to pay for the parking at the machine so I expected him to be waiting at the car when I finally got there. I didn't know what had happened but was afraid if I left the car to look for him I'd miss him.
Finally he arrived and had been looking on a higher level, convinced that the car had been stolen or that I had gone home without him. We always parked on the lowest level. That's when I realized I had to stick close to him in busy places.
Many people are not aware that the WalMart greeters watch as you come in, then run to your car and park it somewhere else. I always remember where I parked, but my car always ends up somewhere else.
phranque, I am glad you cleared that up. They must get a kick out of me looking for my car and I use the remote for the lights and trunk also. My problem is I am daydreaming when I park and just don't pay attention. Parking in the same spot is a good idea.
Phranque..........do you think they do that at Home Depot too????? After all........they are located next to one another. Now I know why Vermont ruled thumbs down to Walmart.
yep...malls and major stores have people that they hire to move your car when you are shopping, and that is why it is never where you left it. I just don;t understand how they do it without the keys, but I guess they have master keys.
We've had the discussion about handicapped plates before but I use them with no compunction; my husband will wait patiently in the car.. and I can FIND the car!
Thanks for bringing this to the top, Rodstar43. The very first entries about interpreting the tests with Joan's comments was very interesting. If anyone is seeing executive functions deficits or suggestions of frontotemporal involvement, the ftdsupportforum.com is an excellent source of shared information and support. It is well organized, well monitored, protective of privacy, and international. It is my other go-to reading spot. Dementias overlap and morph, so the more information from folks on the ground, the better.