Wanting to learn more about progression and stages

Smilescountry

Hello! My dad was diagnosed with moderate stage Alzheimer's in September, and in six months his MMSE score has dropped 3 points. I looked up the numbers online, and it appears that Dad is heading toward the next stage at a pretty moderate clip because it wouldn't take much of a drop for him to be in the next stage. He and Mom sold their Florida home two years ago because Dad was having some problems remembering how to do some routine maintenance tasks, but we did not expect this diagnosis because absolutely no one in our family has dealt with this before. I know that there are good and bad days, but, to me, it seems that some symptoms just continually get worse. Mom and Dad are both in assisted living because Mom also has mild cognitive decline, was unable to care for Dad, and didn't want to leave him. I am trying to understand this disease. I read that Alzheimer's generally progresses slowly, but it seems to me that my dad is progressing faster than expected. He is 88, so perhaps that has something to do with it. Yesterday was a new low. He was able to undress several times but had no idea how to get dressed again. He insisted on going to Mom's apartment to find his clothes, even though his clothes were in front of him. He never called my husband or me by name, and his speech was slurred and somewhat incoherent. Then, today, he called me by name as soon as he saw me. He wasn't totally coherent, but he was much better than yesterday. I also noticed that yesterday he was more willing to accept help, which is new. I don't see this lasting more than a couple of years at the rate he is going, but I am not sure what to expect. Less than a year ago he was driving and taking care of himself. Now, he cannot tie shoes, needs help getting dressed, doesn't know how to use his electric razor, has no conception of time, has to eat with a spoon and a bib, etc. It just seems like a lot in a short period of time. Are there any good resources out there about understanding a more rapidly progressing Alzheimer's? Thanks.

harshedbuzz

Hi.

Aside from dad's neurologist, I don't really know of any site that discusses the whys of rates of progression among individuals.

When my own dad had dementia, 2 of my aunts and a dear friend's mom also did. It was striking how the disease presented and progressed in each compared to the averages.

My favorite aunt had symptoms as early as 2003 based on her husband's deathbed plea for her sister to "look out for her". She was initially diagnosed with vascular dementia in 2008 and later Alzheimer's; she progressed quite slowly and died in early 2018. Her meaner sister was diagnosed in the moderate stage in spring of 2016, broke a hip in the fall, progressed to stage 7 and died before the year was out. My friend's mom was diagnosed in 2016 but had been "off" for a couple years; she died in 2019.

My own dad was diagnosed fairly late because he and my mom attributed his early issues to "the normal process of aging". He was diagnosed in late 2016 in moderate stages and died in spring of 2018. My mom would say his progression was super-fast because she didn't recognize the earliest subtle changes. I noticed changes in dad's personality as early as 2005 and by 2008 he had glaring holes in his memory as well as problems using some of his electronic devices. Perhaps that's what is happening in your family-- maybe mom picked up on subtle changes and made the decision to move not appreciating yet what was happening.

There is also some thought that moving a PWD out of their familiar surroundings and routines can cause the disease to move into the next stage more rapidly. My dad was used to splitting the year between MD and FL, so I don't believe it impacted him personally but other report this as a common consequence of moving.

HB

jfkoc

Unfortunately, there is no real prediction regarding speed or anything else other than there will be decline. We just have to be educated as to how to give the best care at all stages.

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GothicGremlin

I'm with everyone else who has posted - it's almost impossible to know how fast someone with dementia will progress, or what their particular symptoms at any given time are going to be. My sister was diagnosed with early-onset Alzheimer's in 2018, and she was fairly functional back then, she's been in memory care since October 2021. She's probably in the very early stages of stage 7 now.

That said, these are two of my 'go to pages' for stages and what to expect. Keep in mind that everyone is different, but at least you'll have a general idea of what to expect.

Stages of Alzheimer's & Dementia: Durations & Scales Used to Measure Progression (GDS, FAST & CDR)

FAST Scale and 7 Stages of Dementia

Anonymousjpl123

All I can say is that the same thing is happening to my mother. As others have said, it may be that others (including me) noticed and attributed cognitive changes to other things, or that the disease just sometimes progresses quickly.

The lack of clear guideposts is beyond maddening. It makes the sense of powerlessness that much harder.

You are not alone. 2 years ago I would have thought at most my mom had mild cognitive impairment. Today she has trouble remembering people, incontinence, and her short term memory is deteriorating. That said, occasionally she will remember things, like the name of my new boss at work, that totally surprise me.

I have come to realize we are searching for ways to master something that doesn’t have a clear trajectory. Read and learn as much as you can, but realize each individual experience of this disease is unique, and try not to get down on yourself. Underneath these questions I find for myself I’m always questioning whether I’m doing the right thing, not doing enough, etc. - that I’m missing something that might slow down the progression. It doesn’t work that way, I don’t think. Best of luck, hang in there.

Marta

From your description your father may be ready for memory care. How much daily support, or scaffolding, are you and your husband providing to both of them?

Smilescountry

Marta, you are right. We put both my parents in an assisted living facility that provides memory care just before Christmas of '22. The are just a few minutes from our house, and I see them several times a week. I also have two sisters who live a little farther away, but still help. However, I do quite a bit of the work. Dad needs lots of help now, but he is at a really difficult stage.

Smilescountry

Smilescountry

Thanks, everyone, for your comments. It is helpful to know your observations, and I appreciate the two links.

loveskitties

Unfortunately, there is no definitive amount of time a LO with dementia will remain in a certain stage, regardless of what you read. Each person is unique as are their surroundings and other contributing factors.

You are better off reviewing the "symptoms" of each stage so that you can determine where they are headed. Some bounce between stages...some progress rapidly...some more slowly.

Other health issues can contribute to rapid decline. My father was doing well with ADL's and walking, but 10 days in the hospital for a heart issue required him to go to MC because of all the abilities he lost. Initially there was hope for a rebound, but that didn't happen. He died 30 days after move to MC.

Please note, MC did not contribute to his demise...it did offer him 30 days of excellent care...it was the heart issue and dementia which caused his death.

MN Chickadee

The Tam Cummings 7 stages can be a useful guide. It says most stages can last 1-4 years but that is only an average; some people spend much more or less time in these stages. The progression is different for everyone. It will give you some sense of what is to come though. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Any time a behavioral change is sudden it is worth ruling out UTI and other infection. UTIs are common and can be "silent" in PWD with the only symptom being a change in behavior or skills. Can the facility collect and submit a urine sample?

Smilescountry

The facility is very alert to changes requiring testing for a UTI. I do know that when I took him to the podiatrist this week that he had cellulitis in one of his feet, so that is being taken care of. However, he didn't have a fever or other symptoms. Dad just seems to be going downhill fairly quickly. He had that one bad day, and then the next day he was better. The past two days have been not so good, but not like it was the day that concerned me. We are changing his medicines, and he sees his family doctor in less than two weeks. Thanks for the comments and suggestions.

Smilescountry

Also, according to the progression chart that you shared, MN Chickadee, Dad is likely Late Stage 5 and moving some toward Stage 6. This time last year he was driving, taking care of chores at home, and having sporadic memory problems. He wasn't diagnosed until September 2022.

Iris L.

FYI: Frail older adults may not exhibit all signs of inflammation or illness that are seen on younger and well adults. This means they may not exhibit fever or significant pain. Or, they may have pain but be unable to express or to localize where the pain is. Look for body language signs of pain. The entire body should be examined periodically for signs of inflammation or illness, especially in the bedbound and non-verbal patients.

Iris

Smilescountry

True. Dad is still verbal and mobile, but we are having to be much more careful to pay attention to everything that he says and does and to be careful how we interpret it.

ButterflyWings

Smilescountry, you have received excellent feedback here. I do wonder about a silent UTI (DH never had a fever or any other typical UTI or bladder infection symptoms, but it threw him way off, suddenly every time). Also, at your dad's age it could be a TIA or small stroke perhaps. I would be concerned about them being in AL at this point. Is it possible for you or family member to spend a weekend, including overnights, maybe 3-4 days even to really see what is happening? That he was still driving a year ago doesn't necessarily prove he had the capacity, but that you all were really lucky. Thank goodness either way,

But like you said it may not be fast progression, but you are just starting to recognize things more and connect the dots. Especially if no one has been really observing them closely for some time. Things might not really have been as solid as you think. In our situation another family member was doing things and masking for incompetencies while DH was doing the same for them in other areas. They were like the nursery rhyme Jack Spratt -- together they had one whole brain until DH's needs progressed to the point of being undeniable. That's when I really realized the level of co-dependence and mutual denial (plus my DH's anosognosia kicked in early).

My biggest frustration with the stages is how several of them list a duration or demise estimate that says x# of years from diagnosis. That just makes zero sense to me, since onset may go undiagnosed for many years -- it is such a range of timelines for everyone to be "diagnosed". Otherwise, the general guidance provided in the various scales is actually helpful for me to know what to expect "at some point in the future". Some things started sooner rather than later, some overlapped, others like you said seemed to fluctuate, and overall Alz continues its downward march. The saying here is when you've met one PWD, you've met one PWD. Each brain and person is individual, and with multiple dementias and symptoms to figure out, we are making educated guesses at best. Good for you for seeking expert input from both the medical pro side, and the caregiver coping side.

Good luck.

SDianeL

My husband was diagnosed with vascular dementia 2 years ago but looking back he had issues for a year or so before that. During the last 3 months it has progressed more rapidly but there are days that he seems almost normal. Last week was hell. This week he said he loved me and he would "try to do better". It broke my heart. Things that trigger his agitation and anger are when I tell him to do something, try to help him do something or tell him how to do something. So I try not to do those things unless he is in danger of hurting himself. Learn all you can. As others have said there is no way to know how each person will progress. The Neurologists don't even know.

Smilescountry

Hello, Everyone. Sorry that I haven't kept up with the responses well. In the past few weeks, my dad has continued to decline rather rapidly. About three weeks ago, He fell and had a C2 nondisplaced odontoid fracture. Two days ago, he fell again, this time resulting in a hip fracture and and additional fracture in his C1. The surgeon did a partial hip replacement because not doing anything would be too risky. However, for the neck fractures he must just wear a brace. Now we are at the point of deciding where to go from here. He will go to a skilled nursing facility with memory care to rehabilitate for a few weeks, but Mom very much wants him to return to assisted living after his rehabilitation period. This assisted living does offer memory care, too. I received a call from a case manager today, and she was very nice. However, I am feeling a little lost. I feel that Dad is going through different stages quite rapidly. I am going to call his neurologist Monday to see if we might do a phone consultation. Most of the specialists in our area are at least an hour away, and that has been horrible for Dad. I don't think that the staff at the assisted living place have been negligent. Rather, I think that Dad is just progressing that fast. When I talked to one of the nurses tonight, she feels that Dad has lost all depth perception, which would explain both of his falls. And she also feels that we need to move to wheelchairs to keep him safe. Not that he can never get out of his chair, but to use it for many situations so that he doesn't fall.

harshedbuzz

@Smilescountry

You dad does seem to be progressing quickly. I feel like a part of that was that he, like my own dad, wasn't diagnosed at an earlier stage which leaves you feeling like this started less than a year ago rather than years before when he first had symptoms. I saw the red flags in my dad for a decade before he was diagnosed, so his progression didn't seem rapid to me. My mom was in denial until the neurologist beat her over the head with the diagnosis. She, too, would point to dad driving from FL to MD in July 2016 as proof he was "OK" but would leave out the part where he made a wrong turn in SC while she was napping and woke up in GA. He got a formal diagnosis 3 days before Christmas 2016 and died the first week in April 2018.

Another piece to this is that dementia impacts individuals differently. Sometimes people who were very bright and capable bring cognitive reserve to the party which can mask the damage to their brains for a time. My dad struggled with electronic devices, spatial reasoning (depth perception is part of this) and executive function but his arithmetic skills, decoding written words and his speech were largely intact until he died from complications of aspiration pneumonia.

It does sound like your dad is progressing at a rapid rate; with the injuries, hospitalization and anesthesia you will likely not get dad back to a pre-fall baseline and need to consider best care for his needs now. You may be facing a difficult choice around your parents not being together as their needs can't be met by a single facility.

Will the MC side of your mom's facility accept a resident who doesn't ambulate independently? Many MCFs will allow a PWD to age-in-place but will not accept a new resident who can't reliably walk around the unit. My dad's MCF required self-feeding and ambulation. My aunt's allowed wheelchair use so long as the resident was able to get around in it.

HB

Smilescountry

Harshedbuzz, Mom and Dad's assisted living facility does provide memory care and can keep residents through the final stages unless they require tubes or wires. However, Dad will need to go to a SNF to receive daily therapy for a period of time. It is true that there are lots of unknowns yet. I visited Dad today, and he is not bouncing back very well from the surgery. The surgery site itself is doing fine, but Dad is suffering from delirium. The next few days will help determine what things we will need to consider. I am sure that Dad had things going several months before he was diagnosed, but the progress has been quick. I thought that I was prepared for what things might be like after this fall, but actually seeing it play out is rough. The good thing is that in the midst of all the delirium and confusion, it has been mostly sweet.