I was never able to get a clear understanding of the "stages". Divvi, I think that out husbands might be about the same state. He still walks, but falls a lot. He can still feed himself but only from the left side of the plate, have to keep turning it as he eats. He can not speak, read, write, dress himself, bathe himself or use the toilet. What stage is that? Pretty far along I would think.

My dh has Parkenism with AD and VD and severe spinal stenosis (making it harder to place).
We walks unassisted, talks, feeds himself, is continent. Loss of reading skills pretty much and loss of writing.

I figured Stage 5 going into Stage 6. We are seeing the Neuro/Generatic Doc. next week so should get an update. A year ago his MMSE was 18.

I would say my husband is in stage 5/6. He can no longer write, add, spell or carry on a conversation, bathe without assistance, he is not incontinent, however, doesn't do a good job with the clean-up...sometimes I think he forgets all together, he would not eat if I didn't present it to him, takes 3-4 hour naps in the afternoon, voice gets very weak before the nap & in the evening. Doesn't know the name our kids, grandkids or my name. The other day I found out he has forgot how to lick an ice cream cone. He has declined so much since last summer. It is a sad existence for a 58 year old man.

I would have to say very, very early - although I really think he has MCI and hasn't developed fully into ALZ. He does everything for himself (except choose clothes if we go out - he has become somewhat colorblind); doesn't drive though. Just the constant repeating questions every 5 minutes is the biggest thing. So I can't put a stage on him I don't think. He was DX'd in 2003 and has not declined very much since!

My Dh is finishing stage 5 and moving more and more into 6. This is hard to figure with him because with his Learning Disabilities and Mental Illness, there's lots he never could do.

My dw is in mid stage 6. Her immediate memory is gone, short term slightly better, and long term (especially the bad things) is intact. Her speech is choppy and she can no longer write or spell. Her walking is ok, but she does at times have a senior gait. She can no longer drive, nor cook, and cannot remember how to make scrambled eggs. She is very pessimistic, angry and depressed, and a difficult person to care for.

Mine's a mystery, too, Joan. I don't see a great deal of change in the last year although the one before that was the one bad enough to get a diagnosis - or rather start running tests on. The Neuro says "dementia." My guess is stage 6 - mostly but not totally incontinent bladder-wise; can't dress or undress himself without constant coaching and physical assistance, but can bathe himself, does remember things, and tonight at dinner with friends for the first time in YEARS, he held his own more than I would have thought he could. Some confabulation but was actually able to tell a story and finish it without wandering off in the middle. And they were mostly relevant to what was being said. Of course, fell apart in the car returning home. Can read haltingly but with some understanding, MMSE about 16.

My dh is late stage 5 and showing signs of stage 6.

its looking like we arent able to get a diagnosis until things have progressed enough to put them into earlymid stages and still highly functioning. and that only happens becuase we as spouses see obvious signs that something isnt right. it may be just that we can get the objective stages

newly diagnosed

early stage

mid stage

late stage

and anything in between. it seems to become easier to place them into categories as they develop more precise losses. newly diagnosed thru early stages can last yrs and then plateau again into long spin thru mid stages. this is obviously much harder than thought to actually get a clear idea. divvi

My husband has all of the stage 5 symptoms. But none of the stage 6 ones that are physical. He can still sign his name and copy out the date from the newspaper, but they have stopped putting the day of the week next to the date so he has stopped writing the day's name out.

Conversation is gone. His main symptoms are that his language skills get worse every month. But he still walks OK. I'm beginning to see some changes in his walking, but he is still taking long walks every day, and if it rains he is antsy and unsettled until it stops and he can get out again.

He needs to be reminded to take a shower, but if I tell him that tomorrow is a shower day at supper, he mostly can still remember to take it when he gets up. I check to see that the sponge has been moved and I soap it up extra when I take my own shower. I have no idea how good a job he is doing, but I frankly don't much care either at this point. He still shaves, but brushing his teeth went away long before I was checking up on these things, possibly before he was even diagnosed.

I'm guessing late stage 5 and moving toward 6. All the "5" stuff has really intensified lately. Gets lost in the neighborhood, word problems, NO short term memory, confabulation when telling stories, very withdrawn, NO executive functioning, no ability to follow 3 step directions and one step directions are even iffy. Drawing the clock is long gone, can't draw the pentagons in the MMSE and scored an 18 last week, but I think the dr. may have been generous on that even as I watched.

My husband is still in stage 3 after being diagnosed with AD almost 2 1/2 years ago at age 52. He does all grocery shopping, minor house repairs and is still able to read books. His has problems with short term memory and occasionally long term as well. He once was a strong type A personality type but now has become more layed back and humorous.

He has been in the Elan Bap study for almost a year and his MMSE score was 26 last year, recently it has gone up to 28.

I'm gonna say late Stage 5/early Stage 6. No following sequential physical tasks or directions...that seem s to be biggest area of impairment. Short term memory is generally horrible, but sometimes he does okay. Can dress if I lay out clothes. I have to adjust water temp for shower and be there to lead him through the steps. Still brushes own teeth and uses the bathroom independently (and frequently). Eats pretty well, but food has to be placed in front of him and he eats everything on his plate with a fork (even bread, frenchfries, a candybar). Can be left alone for about 3 hrs, but I am becoming increasingly uneasy about that. Leaves everything open: car doors, cupboard doors, dishwasher. I think he can read a bit, but doesn't try anymore.

He hasn't forgotten any people yet. Can still carry on a short conversation, lengthier if it's about the past. The latest thing is thinking we have two houses and thinking that places in Alberta (where we used to live) are here in Phoenix. And everyday at lunch time, he asks about the pink house.

Still pretty pleasant, as long as I can remain patient and calm and not show my frustration.

It seems the younger the diagnosis, the quicker it goes. Is that correct over all, or is it just that it seems that way? Anyone know?

I believe my husband is firmly in stage 6. He is totally incontinent both bowel and bladder and is now refusing to sit on the toilet. He cannot shower himself, just stands until I wash him. Doesn't brush his own teeth or hair, doesn't shave himself, or dress himself at all. His language skills are rapidly disappearing. He still talks but a lot of what he says doesn't make any sense. He can no longer read or write at all, and though he watches a bit of TV he has no idea what is going on and can't follow any kind of plot. He can't be left alone for more than just a very short time when I go outside.He usually doesn't know who I am or that we are married. I have to cut up his food which he eats only with a fork, and I have tocoax him to finish eating. My new respite care worker said after 4 hours of staying with him that she doesn't think he is really in stage 6, but somewhere between 5 and 6. I just nodded, but wanted to say, "Okay, you try staying with him 24/7 and maybe you will see some of the things I see". (Kind of irritated me.)

Not in my experience Charlotte. But my experience is only one person. He was late 50s at Dx, and has barely changed in 6 years.

kathy37,

My husband also has FTD and has personality changes. He is high functioning too. With regard to the phrasing of things my husband now says things like "purchase" instead of "buy". He is also very precise on time now. If I say we will be leaving at 1:00, you better be ready to go :)

Deb--Your post reminded me of something that actually strikes me funny--my husband's verbal skills are getting worse, but he will occasionally correct me when he thinks I use the wrong word! It's usually splitting hairs--but it's so strange--he would never have done that before. It just seems so weird--as he's losing his ability to communicate, yet he is most insistent on me being absolutely precise in what I say.

According to the neuro Kathryn is in the moderate/severity stage

My wife Kathryn has all of stage 5 and either 3 or 4 symptoms of stage 6.. Her immediate and short term memory is gone but her long term isn't too bad except for dates, years and places. She hasn’t fallen down, but does walk very slow and I have to either hold her hand or keep stopping to wait for her, other than that her walking is ok. She can no longer drive or cook at all. She can’t follow the simplest directions and if we are somewhere other than home and she goes to the restroom I need to be standing at the door when she comes out or she will become confused and not know what to do. She loves to get the newspaper, magazines and books but I don’t think she is reading them anymore but just looking at them. She talks about learning to quilt and always ask me to buy her magazines on quilting which I do. I know she will not ever be able to quilt but it makes her happy to just talk and think about it. She watches TV but if you walk out of the room and return she can’t tell you what just happen.

Kathryn can’t do the clock or the pentagons at all and will panic after a few minutes. She also can’t remember the three words they ask her to remember at the beginning.

However some days she seems much better even if for only a day. She still loves going out with friends and going to lodge with me on family nights and everybody treats her so good. They all give her a hug and kisses and she gives them back.

I hear everybody talking about scores. Can you tell what good scores are and what not good scores are. I do not know what Kathryn’s scores are but I will ask next visit.

JimB

Dick is fully in stage 6. I've been laying out his clothing for some time, I have to insist he bathe. His short term memory is shot as is his long term. He's still continent, but has had fecal accidents in the past. His speech is fine but he hasn't known where we live in a long time, nevermind where we are when we go to the doctor. He wears an id bracelet, because I'm so afraid he'll get lost. He would stay in the same clothes from one end of the week to the next, and I admit, I often let him... It's just not worth the effort. He doesn't clean his teeth or shave unless I do it, and sleeps 18 hours a day. He enjoys old Fred astaire movies, and right now is watching Pal Joey with Frank Sinatra. he must have asked me 20 times what happened to Frank Sinatra, and who that woman is (Rita Hayworth)... He would never have had to ask me that.

I would put DH in stage 5, but his mini-mental test has stayed around 22 for the last year. He definitely knows the test and can tell me what the questions will be. At home, he cannot remember anything, has a hard time remembering to change clothes. He will change his underwear once or twice daily, but wear the same pants and shirt for a week, if I let him. He needs to be reminded to bathe and brush his teeth. He can be very verbal in doctor appointments, but not so much in other settings. We recently traveled by plane to our daughter's in TX for a high school graduation.He became confused there and when our connecting flight was delayed coming home. Kept asking why? He is continent, but constantly has to find a restroom if we are out. Had to go before and after the one hour graduation we attended last night. Then twice to the restroom at the restaurant, afterward.He rereads the morning paper over and over if I don't remove it from view.

Got the neuropschologist opinion today from the testing. He came back with aMCI with undetermined dementia. He said there is not enough loss to tag it as Alzheimer. He did put in his report that due to the dementia he believes he will be unable to hold any job.

He came up from 4th grade reading to 5th grade and most other stayed the same. He said due to Art being so upset when he couldn't remember it was hard to really to be accurate. His biggest loss was in a test where he copies a complex picture, then draw it in 10 and 30 minutes. A year ago he did pretty good after 10 minutes and alright after 30. This time after 10 minutes the only thing he could remember is house and that is all he drew was the outline of a house with a cross. No better after 30 minutes. He mentioned FTD because most of his problems are due to memory loss focus in the frontal lobe and the extent of the frontal lobe atrophy seen on the MRI last November.

I asked him about the testing that confused and upset Art so much and he said it had to do with executive function - the ability to change course when conditions warrant it. He couldn't really explain what needed to be done to me. I suggested that the problem with that test seems to be a combo of Art not understanding and him (the psych dr) not being able to communicate to him in a language he could understand. He got a puzzled look on his face, then moved on! :-)

We have the neurologist appointment next month, so will see what she comes up with. I do hope we get the same one. He brought up driving and I told him the Alzheimer Association has a list of things to watch for so you will know when it is time to stop driving. As of now, he has not shown any of those problems.

So, the neuro in Vegas in Nov. said AD; the neuro here in Jan. said aMCI with no dementia; the PCP mentioned due to the jerking and talking when he sleeps (often moaning) possible LBD; the neuropscyh today said aMCI with undetermined dementia, possible FTD; and now we play the waiting game to see where symptoms lead us.

My wife seems to be solid stage 5. She is age 64 and diagnosed 4.5 years ago.

She has much difficulty with verbal communication. Calls every animal (and bird) a squirrel. Almost always has to point to things when she is trying to communicate what she wants. The last time we were at neurologist she could not name common items (watch, shoe, shirt, tie) and did not know day, month, year, season, coming holiday, etc. She can fix cold cereal for breakfast and heat tea in the microwave (by pressing one button) but otherwise does no meal preparation. Does not remember what foods are; chicken, pizza, cake, etc. She does not remember anything from her past, where she lived, where she went to school, childhood friends, high school, college, etc. She remembers that she was a school teacher but could not say where or what she taught. I noticed last week that she does not recall names of her 5 sibling. She does know our children and grandchild. She likes loading the dishwasher but when unloading does not know where things go in the cupboard, except silverware, cups and bowl that she uses every day. If I tell her it's next to the refrigerator she may point to the stove and ask, "this refrigerator?" She can dress herself but would put on the same cloths every day. Gets argumentative when I tell her she needs a bath and I have to help her shower and wash hair. Short term memory has gotten very bad in past 6 months. Constantly asking about things planned for the day. She can count dollars but not change. Cannot do simple arithmetic. Still wants to write checks to pay bills but 3 out of 4 times does not do it correctly without help.

She still gets up at 5:30 am as she did when she worked and does not nap at all during the day. She reads road signs aloud when we are traveling but sometimes says, "I wonder what that means." She reads simple books to our four-year-old grandson but mispronounces many words (grandson corrects her). Until six months ago she read two newspapers a day although she could not say what she had read immediately after. Now she will look at the front page but does not open the paper. Will write things we are out of on the grocery list by copying exactly what's on the label. If I ask her to write something on the list she usually does not come close to correct spelling (pama for bananas). When we get to the store she does not recognize items on the list.

She is still continent but uses the bathroom often, every 20 minutes. She uses public restrooms alone but sometimes gets disoriented when she comes out. I have not yet noticed problems with small motor coordination or gait. She does not wander, in fact won't leave the house alone. She is very protective of our grandson. If we are in the yard and I come inside for anything she will ask, "where's Bryan?" and go looking for him if I don't return to the yard immediately. She seems to sleep well. Sometimes in the morning she will insist that it is the night before and thinks she has not been to sleep. She got very disoriented the last time we stayed in a hotel. She does not seem to be depressed by her condition; to the extent she is aware at all, she regards it as an inconvenience rather than the disability that it is.

Does anyone else ever wonder why, they all have problems with bathing, brushing teeth, shaving, toileting or anything else that has to do with water?

My dh is usually good for bathroom at 2 hours but I notice lately usually he wants to go a little sooner. WE will go to granddaughters basketball games and the last couple of months he ALWAYS has to go to the bathroom. Does that not sound like a child?

Course I can't talk, because I always have water by my side and therefore have to go frequently myself. I have all the public restrooms
bookmarked in my mind for myself as well as dh. Only a few suitable for him being near the door.