Stages of Alzheimer’s. Anyone else find the stages of AD a bit frustrating?

”A good Servant, but a poor Master”.

“Staging” can be useful as a potential tool, but after spending some time with a victim of any cognitive/neurological condition, an attentive and sensitive caregiver can usually “write the book” themselves.

And in case it’s helpful to someone, a good professor in any field that relies on diagnostic information will usually say just that. You take your percentages and compare them to statistics and assess the therapeutic techniques that you hope will work, then with trial and error, intuition, and background research, do the very best you can.

Despite the fact that I am an advanced practice, PhD-level nurse, I find Alzheimer's disease to be so variable -- so please don't feel bad that it seems confusing and frustrating! It can also be so much more difficult to deal with when it involves someone very close to you!
There can even be major differences in how dementia (Alzeheimer's type or not) will manifest in members of the same family. My grandmother never seemed to have trouble recognizing people and recalling their names, although close to her death she would demonstrate a vacant kind of stare that seemed very reminiscent of an absence seizure. She never forgot how to eat and never had any reduction in her appetite. In fact, she was begging for ice cream shortly before her death. As for other family members? It showed up early on as not just difficulty with remembering facts with conversations full of confabulation, but with steady disintegration of higher order critical thinking and the ability to recognize the potential location of objects in the environment that are not immediately in sight, such as not finding a utensil near the sink because it was under a dish towel. The dementia affected their appetite; they would play with food and require both visual and verbal cuing to get them to continue to eat.

How a person experiences dementia seems to be as unique as the person himself or herself.

Big hugs to all of us going through this brain robbing disease. It is a roller coaster ride for loved ones and caregivers. From my past experiences as my Mother’s caregiver with it, taught me to live in the moment, because it can all change in a second. Try not to have expectations, as hard as that is. Find even a very small thing to give you and the loved one comfort and love. Journaling has helped me a great deal as my husband, per his doctor, is now in stage 6 of 7. The stages give you an awareness to the care that might be needed and what to expect in the future. But each stage can last for different periods of time and be somewhat different for each. With all that being said, this is for all of us. Show and give your love in every way possible now. Don’t wait for another day. And take care of yourself as we grieve what we are loosing, even while they are still alive. Cherish the days and years we have had with them. ❤️

Imho, while most certainly Alzheimer's can be "frustrating," I would categorize it as an horrific disease. I am so sorry that your DH has the disease and I do understand that your post was about the stages of Alzheimer's.

I find the stages frustrating as well. My dad is 93 but we don't know if it is AD or just dementia or a combination. I know part of it is vascular in nature. In any case, the ups and downs, good and bad days throw me for a loop. When he is having a good day, I get hopeful again... I know better but I can't help but want him to get well. On the really bad days I'm wondering if the end is near and start reading about end of life signs. Then he'll have a good day. Although the good days are not as good nor as frequent... so "good" just is becoming better than yesterday. I feel so bad for him mostly. He would never want to go this way.

I, FOR ONE, AM GRATEFUL TO HAVE THE 7 STAGES OF ALZHEIMER'S DISEASE CATEGORIZED THIS WAY. WE HAD ONLY THE ORIGINAL 3 STAGES WHEN MY HUSBAND STARTED ON HIS JOURNEY IN 2002.
WHEN I REALIZED THERE WAS A PROBLEM I GOT HIM TO A TOP NOTCH NEUROLOGY DR IN TAMPA FLORIDA. THE DR PUT MY HUSBAND THROUGH ALL KINDS OF TESTS, CT SCANS, MRI, ETC. THE LAST TEST DONE WAS A SPINAL TAP. THE REPORT CAME BACK POSITIVE FOR THE P TAU PROTEIN...THERE WAS A LARGE AMT ON PLAQUE AND TANGLES IN HIS BRAIN. HIS SHORT TERM MEMORY WAS BEING SHORT CIRCUITED. THE DIAGNOSIS WAS EARLY ON-SET MILD TO MODERATE ALZHEIMER'S DISEASE. BASED UPON THAT HE WAS FORCED TO TAKE EARLY DISABILITY RETIREMENT FROM HILLSBOROUGH COUNTY PUBLIC WORKS. HE WAS 54 YEARS OLD.
AT THAT TIME THE AD ASSOC HAD ONLY 3 STAGES OR CATEGORIES...MILD, MODERATE, SEVERE. BUT NOW WITH THE 7 STAGES OR CATEGORIES...I AM ABLE TO KEEP TRACK OF WHERE MY HUSBAND IS IN THE PROGRESSION. YES, THERE WAS TALK OF MAYBE HE HAD THE VASCULAR TYPE, BUT OVER TIME HE DID NOT FIT THE PROFILE FOR VASCULAR, NOR FOR THE LEWY BODY TYPE.
HE WAS BEING FOLLOWED BY 3 DR'S THE 1ST 2 YEARS FOR ANY MENTAL AND PHYSICAL ISSUES. MEANWHILE, THANKS TO THE AD ASSOC OF TAMPA THEY WERE A BIG HELP TO ME. I READ AS MUCH AS I COULD ABOUT THIS DISEASE BUT THERE WASN'T AS MUCH KNOWLEDGE THEN AS THERE IS NOW.
SO, YES, I AM SO GRATEFUL TO HAVE THE 7 STAGES BECAUSE IT HELPS ME TO KEEP A CHECK ON THESE STAGES.
AS OF FEB 2021...MY HUSBAND IS IN A NURSING HOME AND I AM FIGHTING FOR HIS RIGHT TO TENNCARE MEDICAID FOR LTC. HE IS 73 AND HAS MULTIPLE HEALTH PROBLEMS. HIS SHORT TERM MEMORY STARTED DECLINING MORE OVER THE PAST YEAR AND A HALF. I WAS ABLE TO SEE THAT HE IS NO LONGER IN THE MILD COGNITIVE STAGE. HE EXHIBITS SIGNS FROM STAGE 3 ONE DAY, THEN HE MIGHT GO UP TO STAGE 6 THE NEXT DAY. WHEN HE LOST CONTROL OF HIS BLADDER AND BOWELS, AND HE WENT INTO THE SUNDOWNER'S MODE, THEN HE BECAME WEAK, CONFUSED, AND DISORIENTED. I HAD TO SEND HIM TO THE ER, FROM THE HOSPITAL HE WENT TO A REHAB FACILITY. THEN HE CAME HOME ON FEB 13, AND ON FEB 17, BECAUSE I WAS SO SICK AND IN PAIN WITH GOUT I HAD TO CALL THE AMB TO PICK HIM UP AND TAKE HIM BACK TO HOSPITAL. FROM THERE HE WENT TO A NURSING HOME PENDING MEDICAID APPROVAL. HE WAS DENIED AND I AS HIS DPOA, FILED AN APPEAL. WE ARE WAITING FOR A HEARING DATE ON THAT.

MY POINT TO THIS LONG POST IS TO LET EVERYONE KNOW...PLEASE DO NOT DISMISS THE 7 STAGES OF ALZHEIMER'S DISEASE. STUDY IT. IT REALLY IS A BIG HELP BECAUSE YOU, AS THE CAREGIVER OR THE SPOUSE...WILL BE ABLE TO KNOW WHEN THEY ARE DECLINING OR MAYBE THEY ARE JUST HAVING A BAD DAY. HOW CAN YOU TELL IF AND WHEN THEY ARE LUCID? THAT IS A GOOD DAY WHEN THEY CAN ENGAGE IN A CONVERSATION WITH YOU AND IT ALL MAKES SENSE. A BAD DAY IS GOING TO GET YOU "I CAN'T REMEMBER" OR "I FORGET". LOOK FOR THE BLANK STARE...AS IF THEY ARE TRYING TO STARE YOU DOWN. THAT IS A BAD DAY. THEY WON'T BE ABLE TO TELL YOU WHAT THEY ATE FOR BREAKFAST AND NOW IT IS LUNCH TIME. THOSE 7 STAGES ARE VERY GOOD GUIDELINES.
ONE LAST THING...NO MATTER WHAT THE SITUATION DO NOT ALLOW THEM TO SIGN ANY PAPERS UNTIL YOU, THE SPOUSE OR CAREGIVER WITH THE DPOA, CAN LOOK OVER THE PAPERS.
SOMETIMES, A NURSING HOME WILL TRY THAT BUT IT IS AGAINST THE LAW. IT IS FRAUD. IT IS ELDER ABUSE .
IF YOU ARE THE SPOUSE...STAND YOUR GROUND. DO NOT BE AFRAID TO CHALLENGE SOMEONE WHO MIGHT BE TRYING TO TAKE ADVANTAGE OF THE AD PATIENT. I AM THE WIFE/CAREGIVER/DPOA/AND A RETIRED LPN NURSE. I AM 81 YO AND STILL FIGHTING FOR MY HUSBAND AND DEALING WITH MY OWN HEALTH PROBLEMS. STAY ENCOURAGED...READ YOUR BIBLE...LISTEN TO SOME OLD GOSPEL HYMNS THAT MOST OF US GREW UP ON.
BLESSINGS TO ALL OF YOU AS WE ALL WALK DOWN THIS ROAD.

Each person is different and the brain of each is effected uniquely. The goal of stages is mainly to help medical personnel and caregivers in planning care. Medications may work in earlier stages but not in latter stages. Treatments may work in some stages but not others. Also, each person reacts differently to treatment. That is why caregiving is part science but mostly art. As long as you can care for your DH while making sure your own needs are met, then stages are not really an issue.

However, stages do show the usual progress of this disease process. Use the information to help you plan for the future. I am most concerned that caregivers need to prepare for the time when the one cared for needs help 24/7 - like when they are confused about day and night or when the caregiver can not get 7-9 hours of uninterrupted sleep. Please consider how you will handle the time when your DH may need more help than you can provide alone.

Remember when your kid didn't sit up at the same time as your other kids?

My eldest walked at 19 months. My second walked at 10 months. This is why I threw out "What to Expect When You're Expecting." My kids didn't follow the timeline in the book at all and it was beyond frustrating.

Babies and their milestones are all over the place, and so, too, are Alzheimer's patients. Best to just go with the flow and live in the moment.

My mom had Alzheimer's and her disease didn't necessarily follow the expected "stages" of the disease. She always knew who I was, but paranoia crept in, as did illusions and delusions, but she never really had many memory issues. It was more behavior related with her. It didn't matter what the "books" said. For me, those were guidelines, but it didn't mean that they were etched in stone. Frankly, when I was dealing with it, (and reeling from it), I didn't have time to read much about it; I've just educated myself a little more about it lately. I even wrote a book about our trials and travails taking care of her called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I tried to write it with humor and heart, since you need both when dealing with Alzheimer's. Best of luck.

Yes, my 97 yr old Dad has dementia with very short term memory like a few minutes.
He lives in his own home and has Caregivers 24 7.
I have installed Nest Cameras which were pretty easy to do so I can check on him anytime, 24 7.
He knows several people but mostly not names, just faces.

I pay no attention to "stages" - in my professional world we only talk about beginning, middle, and end. Several clients experience all three stages as the day progresses.

I am so sorry you are going through this. With my parents (both had dimentia at the same time, different types) I found it easier to cope by "intellectualizing." By that I mean I did try to sort of look at it as a case study. That kept me away from the emotional experience. Essentially like what you mentioned about it being fascinating if it hadn't hit so close to home. I chose to focus on that "fascinating" aspect as a coping mechanism. And what I did learn is that the stages (mom's dementia was AD) are just guidelines. Some of mom's symptoms were stage 1, while some were stage 4. One day she would seem to be clearly stage 3, the next stage 5 and a day or two later, stage 2. I concluded that each person's journey through this hellish disease is unique, and can differ from day to day. The brain is just too complex to predict how things will affect it. So for me, taking each day as it comes was a good strategy. But just as the disease can be unique for each person, so too, the best way to cope is unique to each person. When you find what helps you get through it, don't let anybody tell you that is the wrong way (save for self-destructive methods; then I would encourage that person to get some help instead of trying to go it alone). Wishing you love and support as you travel this most difficult road.

Frustrating? Yes.

We tend the use the simple Early, Moderate, Advanced here. Or called Early, Middle, Late. I find it ok.. very simple - maybe too simple.

I really dislike the 7 stage model, as quite complicated & many people do not fit this model in order.

I much prefer Teepa Snow's Gem model. The focus is on care & what's still working, rather than deficits. I hope this becomes the new standard.

I "laughed" at stages.
I found the process fascinating, educational and downright challenging.
My Husband was doing things he should not have been doing up until about 2 weeks before he died. But he stopped doing things early on that most would do.
I do not know for sure but I think he also had Vascular dementia with the Alzheimer's so that might have played a big role in what he did do, couldn't do.
go with the flow.
think outside the box when it comes to solutions for a particular problem
As each person with dementia is different so is/ are the problems they have as well as the solutions to those problems. Often the only solution to a problem is to wait it out and the decline will change one problem for another. Made me realize that todays "BAD" day might be considered a "GOOD" day in a week a month, or in some cases a day.

What you call stages of AD, are actually stages of dementia, of which, AD is one cause. The stages are suppose to be typical for all the neurodegenerative diseases and also VaD. I believe, however, they should be considered more of a continuum rather than stages. It's not unusual for someone living with one of the dementias to revert back to a previous stage, or to jump ahead some stages. I also don't think everyone experiences all 7 stages of dementia symptoms. What if someone exhibits symptoms from different stages, where would you place them? Different dementia diseases can manifest themselves differently. You can use the stages as a guide in anticipating future symptoms, some of which may never occur, but not to determine specific durations of any phase or, necessarily, what to expect next for your LO. What's important, I think, is not so much where a person is on the continuum, but how the caregiver addresses the progression of the disease, and that the caregiver realizes there are limits to his/her ability to properly care for their LO.

You are correct when you say not to focus on the stages, as each person suffering with Alzheimer's/dementia decline at different paces, depending on what type of dementia they have.
You're best to just try and enjoy whatever time you have left with your loved one, and also enjoy that he still knows who you and your family are, as that could change at any time.
My husband who was diagnosed with vascular dementia(the most aggressive of all the dementias, with a life expectancy of 5 years) in 2018, died in Sept. 2020, while a friend from my local caregivers support groups wife has had Alzheimer's for the last 18 years, and she's now just in the final stages, so as you can see, it ranges tremendously.
You are best to just keep doing what you're doing, and that is going with the flow. Best wishes.