This is from a Fact Sheet entitled "Alzheimer's Disease: Progression" that appeared briefly on the Alzheimer's Association website. I cannot find it there anymore, perhaps because it is more of a detailed description of behavior changes than a description of disease progression. I think it is a very good list of things that may be seen in the person with Alzheimers.

The changes are not uniform in every person with Alzheimers.

The list for the mild Alzheimers serves as a good list of warning signs.

Common Changes in Mild Alzheimers Disease

- Loses spark or zest for life – does not start anything. - Loses recent memory without a change in appearance or casual conversation. - Loses judgement about money. - Has difficulty with new learning and making new memories. - Has trouble finding words – may substitute or make up words that sound like or mean something like the forgotten word. - May stop talking to avoid making mistakes. - Has shorter attention span and less motivation to stay with an activity. - Easily loses direction when going to familiar places. - Resists change or new things. - Has trouble organizing and thinking logically. - Asks repetitive questions. - Withdraws, loses interest, is irritable, not as sensitive to others’ feelings and/or is uncharacteristically angry when frustrated or tired. - Won’t make decisions. For example, when asked what she wants to eat, says “I’ll have what she is having.” - Takes longer to do routine chores and becomes upset if rushed or if something unexpected happens. - Forgets to pay, pays too much or forgets how to pay – may hand a checkout person a wallet (or too much money) instead of the correct amount of money. - Forgets to eat, eats only one kind of food or eats constantly. - Loses or misplaces things by hiding them in odd places or forgets where things go, such as putting clothes in the dishwasher. (Misplacing items may cause the person to acuse others of stealing things) - Constantly checks, searches or hoards things of no value. Also (my addition) -loses concept of time, cannot tell time from a clock with hands.

Common Changes in Moderate Alzheimer’s Disease

- Changes in Behavior, concern for appearance, hygiene and sleep become more noticeable. - Mixes up identity of people, such as thinking a son is a brother or a wife is a stranger. - Poor judgment creates safety issues when left alone – may wander and risk exposure, poisoning, falls, self neglect or exploitation. - Has trouble recognizing familiar people and own objects; may take things that belong to others. - Continuously repeats stories, favorite words, statements or motions like tearing tissues. - Has restless and repetitive movements late afternoon and evening, such as pacing, trying doorknobs, or fingering draperies. - Cannot organize thoughts or follow logical explanations. - Has trouble following written notes or completing tasks. - Makes up stories to fill in gaps in memory. For example might say, “Mama will come for me when she gets off work.” - May be able to read, but cannot formulate the correct response to a written request. - May accuse, threaten, curse, fidget or behave inappropriately, such as kicking, hitting or grabbing. - May become sloppy or forget manners. - May see, hear, smell or taste things that are not there. - May accuse spouse of an affair or family members of stealing. - Naps frequently or awakes at night believing it is time to go to work. - Has more difficulty positioning the body to use the toilet or sit in a chair. - May think mirror image is following him or television story is happening to her. - Needs help finding the toilet, using the shower, remembering to drink, and dressing for the weather or occasion. - Exhibits inappropriate sexual behavior, such as mistaking another individual for a spouse. Forgets what is private behavior, and may disrobe or masturbate in public. (This is not common, perhaps 3% have this behavior)

Common Changes in Severe Alzheimer’s Disease

- Doesn’t recognize self or close family - Speaks in gibberish, is mute or is difficult to understand. (Geri Hall describes “word salad”) - May refuse to eat, chokes or forgets to swallow. - May repetitively cry out, pat or touch everything. - Loses control of bladder and bowel. - Loses weight and skin becomes thin and tears easily. - May look uncomfortable or cry out when transferred or touched. - Forgets how to walk, or is too unsteady or weak to stand alone. - May have seizures, frequent infections, falls. - May groan, stream or mumble loudly. - Sleeps more. - Needs total assistance for all activities of daily living.

found on the web at http://www.alzheimers.org/pubs/stages.htm

------------------------------- An article on Behavioral Problems in Dementia

"Behavioral Problems in Dementia" written by doctor http://www.postgradmed.com/issues/2004/06_04/smith.htm

Covers - Agitation (and Catastrophic reaction), Delusions, Hallucinations, Resistiveness to care, Disinhibition, Wandering, Sleep disturbance, and Apathy and depression.

A good article but not great. Provides a quick review of behaviors and treatment. It does deal nicely with the non-drug recommendations that are made for the various behaviors.

However - Regarding table 1 and drug recommendations. Some of the recommended dose ranges exceed normal recommendations for dementia. Some of the drug recommendations are based on anecdotal information or very preliminary study information. Table 1 lists the use of ativan which we know is bad for dementia patients.


[This Message was Edited on 01/31/2006]

Thanks for posting these.

This is exactly what happened to my parents in the early stages. Karen

My husband has all of the above you described, since day #1. Only one exception, that with his dosage of Namenda he has mellowed out & seems to be more compassionate. For example: He came home yesterday from respite care commenting on a gentleman there that has Parkinson's & how bad he felt for him. I have met the man, so I know for sure that there is such a person there....will be talking to staff to see if his details are correct. Knowing my husband, he is probably starting to "think" he has a "position" there to "look" after some of the other persons w/respite care. I have no problem w/that as he has always been a people person & needs the contact w/others for his well-being.

Just wanted to comment that the Namenda is working great for us so far....Thank God. Know that the medication isn't a "forever" thing, but am greatly relieved that it is well tolerated by my hubby & is a gift given to us for whatever time God allows.

Wishing you well, Maria
[This Message was Edited on 07/28/2004]

Thank you for posting the behavior changes in Alzheimers.

All of the above behavior changes except two have occured with my husband. He still enjoys things around him, however he does not initiate day to day activities. I am so glad that he still has a very good appetite and looks forward to all meal times.

There are some additional behaviors he displays that are not listed. Like he still thinks that he is absolutely fine to drive our car. When he brings up the subject, I just change the topic. We are down to one car for the past two years and my keys are no longer in my purse. I have them hidden after each outing.

Funny that you mentioned:

"Also (my addition) -loses concept of time, cannot tell time from a clock with hands."

Really, it fits my husband most of the time, also does not remember the day of the week, the month, or the year we are in most of the time.

Also, when we are gathered with friends or family and he occasionally will say something (he has become very quiet most of the time) he will relate a happening, if he feels he is stuck on the topic, he just makes up something or other that is not true.

Numbers, especially, escape him entirely: our phone number, house address, ALL birthdays in the family. He has to stop and think of when his birthday occurs.

Last week he told someone that he is 73 years old. When we got out of the store, I laughingly said to him, " ah, you're shaving a couple of years off, are you?" His response was, with a straight face yet, "Am I 72 years old?" I told him, no, you're 75 and holding" and I just smiled. He answered with, "Really, 75, I'm 75?" . . . so it goes from one day to the next.

He declared not long ago that he doesn't need to go to the doctor any more meaning the neurologist. He said what can she do for me anyhow, I'm fine. I had to explain that she keeps track of his meds, etc. He does not want to hear about AD and I feel deep down he knows of course but really does not want to believe it. - - - - the list goes on. But like so many here, I count my blessings, and there are more blessings than not. Always accentuate the positive is my attitude.

Norbert, your great information is always appreciated.

You and Pat are fantastic resources. The two of you pretty much have all the bases covered for getting sound and solid information to us all. You are the best!

Many thanks, bless you. MaryKathryn2

P. S. 7-30-04 Correction

Norbert: My earlier response to your Common Changes of AD Diseaes pertaining my husband were only drawn from your Common Changes of the Mild Changes of the AD Disease.

Today I am adding some of the behavior changes in him that are on your Common Changes in Moderate AD Disease. Those being:

Using poor judgement that could create a safety issue.

Repeats the same stories over and over; some stories get embelished with untruths.

Cannot organize thoughts or follow logical explanations.

Makes up stories to fill in the gaps.

He still reads but is unable to share what he has read.

Forgets some of his good manners.

Often when I am driving, he will ask me were we are, even though we are traveling through areas he himself has driven many times over 30 years.

He often cannot express what he wants to say about a family member, not remembering his/her name and then the story he is trying to tell is difficult to figure out to the listener.

I am adding this to your list Norbert: he cannot remember two things at the same time to follow through on something. However, he totally surprises me at times in the evening and checks if the front door is checks if a window is closed.

The doctor diagnosed him to be at the moderate level of AD.

Thank you again for all your help. MaryKathryn2




[This Message was Edited on 07/30/2004]

MaryKathryn, I included the understanding of time because it was the first thing that we saw with my Aunt that told us that absolutely, something was wrong. First she was upset that we had missed our appointment to take her out for her birthday (She had our letter in her hands when she called and didn't realize that the "8th" occurred the following weekend). Six months later, we discovered she couldn't tell time. Every clock in her house was wrong and when my brother reset them, she asked, "You just look at the big hand right?" (Two years later, my mother asked me the same question, and I knew what this meant.)

It's amazing how little is mentioned about the loss of the sense of time. There is one person who does make this point. Nurse practitioner, Geri Hall from the University of Iowa has given a number of talks about Alzheimers and recently testified before the Presidents Council on Bioethics. She specializes in medical outreach to live-alones. She makes the point - can you imagine how difficult it is to function without the concept of time?

To me, it seems that besides the memory problems (which they can cover), a real tell tale sign of dementia is the loss of mental functioning involving more abstract concepts - this includes judgment, time, money, numbers and math, and later, tasks like meal planning, shopping and meal preparation become difficult.

These things seem to be stage 3 difficulties

Anyway, I hope this is helpful for others.

Norbert

To find Dr Hall's testimony, do a web search on "Aging, Dementia, and the Care-Giver"


[This Message was Edited on 07/29/2004]

Thank you for your thorough explanation of stage 3 and also for the information about finding Dr. Hall's testimony on Aging, Dementia, and the Caregiver. I will look it up after sending this post to you.

So sorry to hear that you have gone through this with your aunt and now your Mom as well. Your Mom is very blessed to have a son as wonderful as you are looking out for her best interest with love and caring.

I am so grateful for your ongoing research. We all benefit tremendously from your generosity and expertise.

Bless you, MaryKathryn2

I just read a bunch of your old postings and then I discovered in re-reading your profile that your Mom also has passed away. I feel so foolish not taken better notice of this. I am so sorry. May she rest in peace.

Please forgive my short-sightedness. MaryKathryn2

No problem - No damage done. I know that there are so many posters here, it is sometimes hard to keep people and their situations straight.

Norbert

Just wanted to say "Good Morning" to you - and keep up the good work with your research. It is so helpful to us who are, daily, looking for more info. Sandy :)

such detailed behavioral changes for the late stage, not final stage. There seems to be so little information on advanced stage and I would like to know what to expect with my husband.

I have put in the rest of the document that includes middle and late stage. I didn't put it in at first because it had to be typed from the hard copy.

You are right. There is very little literature about the issues of late stage Alzheimers.

Norbert

to the top for Norbert

MaryKathryn2

I edited my earlier post.

Thank your for this information. Is there anything that lists the stages in a 1, 2, 3 manner? I realize it is differant for each individual and until this sight had thought there were only 3. Now I see 5, 6, 7, I had also heard Alzheimer's normally is a 12 year disease. Do you have any information on this?

Thank you

Flight

For the 7 stage system - Please see “FAQ - Seven levels of dementia” that has been brought up on the list. This is the staging system developed by Barry Reisberg at NYU. He also based the Functional Assessment Staging document and the Theory of Retrogenesis on this 7 level concept.

Most doctors do not attempt to determine a person’s level of dementia with the precision implied by the 7 level system. Most use the more intuitive 3 level description of mild, moderate or severe.

There is no one or any government body telling people what system must be used – traditional 3 stage, Reisberg 7 stage, or a 4 or 5 stage system published at University of Washington in St Louis.

The Statistics cited most often is that a person with Alzheimers will live between 3 to 20 years with the average being 8 years. Each person is different. They may progress rapidly, and then stabilize for a long time. There is no predicting for a particular person.

Norbert

Of the 20 things listed for mild alzheimer's I recognize only 4-5 in me. I tell time great. I am not able to get a second opinion just yet. It would take my finances to frightening levels & threaten my basic well-being. I have a general doctor through an agency right now. I think you may know I passed on Cobra. Hated to do that but it just would have made things too stressful for me.

I hope our social inclinations on this board do not distress you. You are always able to still find the more complex and informational issues. You must do well at skimming in reading. I skim well too to find info I need.

One big change in me is I am much more socially oriented in the past year. But that is not a regular alzheimer's symptom. Just more lonely now that I am not working.

Julie

I can say after starting aricept,so things got better for.That was4 years ago.When i do thing I fine myself saying how are you using your right judgement.

Garnette

I got a purple dress today for my red hat dinner.Also a purple pant suit .but i can wear them to church.Yes they was on sale.

Julie, I didn't understand what you meant when you wrote to Norbert, "I hope our social inclinations don't distress you." I don't believe he has ever separated our anguish from his technical help. Just wondering. Stay strong.

Wow, this was just what i needed it help me to understand the stages of AD, my Mom has most of the middle stage, thanks so much for sharing. Mary

For the great info! One thing that puzzles me is why do they want to hoard and hide things? My mom constantly loses things and I wonder if at times she is packratting them away??