Help understanding the stage

Johnnydog · May 24

Hello all. I am new here and feel like I’ve found myself on a very fast track in this journey.

Starting around 2023, my DH’s doctors began mentioning dementia, but we never got a firm diagnosis or clear treatment plan. They just kept re-doing the SLUMS test, and while we knew something was wrong, things still felt somewhat manageable. Then everything changed very quickly this February.

First he badly injured his hand in a lawn mower and needed surgery. A week later he fell head first down the stairs and suffered a subdural hematoma <2mm (this has improved slightly in a follow up CT scan). Since the fall I feel like I’ve been trying to catch up to where things suddenly are. I had thought we had more time. I had started making plans for extra support down the road, but now I’m basically caring for him 24/7.

He can seem almost normal in conversation when he first wakes up in the morning. But functionally he is quite limited. He’s physically unsteady, and I can’t trust him safely in the kitchen - well anywhere really. But talking to him, he can still seem very much like himself. We have cameras, door alarms, and an intercom, and thankfully he now understands the stairs are unsafe and waits for me to help him.

But as the day goes on, things become much harder, especially around 3–4 p.m. I believe he is sundowning. Sometimes that part of the day feels honestly a little spooky for me.

I’ve started recognizing it and trying to redirect him. He loves sweets and soda, so I save those for later in the day. I’ll also put on Cheers, which he loves to watch over and over. The familiar routine and distractions do seem to help.

With our new doctor we saw a neuropsychologist, and dementia was confirmed, but because DH couldn’t tolerate all the testing (terminated the testing visit 1 1/2 hours early, couldn't stay still in an MRI), I still don’t have much clarity beyond that. We also have an appointment next month with a psychiatrist who specializes in dementia, and I’m hopeful that may help me to know where we are at.

I think my biggest reason for posting is this: I’m always impressed when people here can speak so confidently about what stage their LO is in, and I honestly have no idea where my DH is. How did you figure out what stage your loved one was in—especially when they can seem so different depending on the day or even the time of day? And did anyone else feel like things changed dramatically after an injury or hospitalization?

Thank you for reading.

harshedbuzz · May 24

@Johnnydog

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

It sounds like you have had a somewhat convoluted journey to getting a diagnosis. That sounds frustrating. That said it sounds as though you are managing his mood and behavior really well given the limited information you have so far.

Most folks here who talk about stages are using the 7-stage model based on DBAT that looks at stages based on typical symptoms and care needs. This is in contrast to medical professionals who more often use a 3-stage model based on treatment options.

DBAT (1).pdf

Since you are his primary caregiver, you probably have the best sense of where he fails on the DBAT scale. Most PWD seem to straddle one or two stages, but are considered to be in the latest stage for which they have a symptom/behavior that can't be explained by some other condition like a UTI.

It's pretty classic for a PWD to progress in the disease as the result of a hospitalization, significant injury or illness. Sometimes they'll return to or nearly to their previous baseline once home, recovered and back in their usual routine for a week or so. Sometimes the change is permanent.

Sometimes vascular dementia progresses in a series of steps down followed by plateaus compared to Alzheimer's which tends to be a steadier progression. Sometimes, especially in VD, sometimes progression can be a chicken or the egg scenario. In the case of the lawn mower accident, perhaps he had some loss of ability around handling it safely since the last time he used it which led to the accident rather than the trauma of the accident causing the causing the downturn in his abilities.

I hope the new doctor can help you. Dad's geriatric psychiatrist was the most importmant member of dad's team after my mother. He was much more helpful than the PCP or neurologists dad saw.

HB

H1235 · May 24

Welcome. Doctors tend to use the 3 stage model. I have never had a doctor give me a stage using the 7stages. To be honest I think most of the time doctors don’t really know our loved ones and spend enough time with to use it. It’s my understanding a person is considered in the latest sage they have a symptom. A person with dementia will not necessarily develop all the symptoms in each stage. I would think of the stages as a guide that might help you with what could be coming next. The dbat also gives a rough age equivalence at each stage, recommendations in level of care needed and a rough time frame for each stage (although I think that applies mainly to Alzheimer’s, other types of dementia may be different). This information may help when considering if your loved one is safe to be left home alone or something like that. Symptoms can vary from day to day and hour to hour. It’s best to plan the level of care needed based on their worst day or time, since you never know when things will change. I will attach the dbat. I think it makes it pretty easy to figure out. I wouldn’t get to hung up on an exact stage. It’s really just for you anyway.
It’s not uncommon for an injury to cause confusion and stress to the point that dementia progresses. In some cases the pwd may come back to base line after recovery, in others no.
Don’t get your hopes up with the upcoming doctors appointment. Treatment options are very limited and may only slow progression. Dementia is pretty ugly. You need to consider if slowing progression is really a good thing. There are medications that may help with the symptoms.

DBAT.pdf

understanding-the-dementia-experience 4.pdf

I wrote this but never hit send. So there is probably some repeat of what hb has said.

Johnnydog · May 24

Thank you so much for your time and responses!

MargeSimpson · May 26

https://alzconnected.org/discussion/76115/help-understanding-the-stage

My husband was diagnosed with MCI due to AD over two years ago. Recently, his doctor changed that to mild dementia. I find the 7 stage model, which most people seem to prefer, too complicated for me, so I prefer the 3 stage.

Leesee · May 26

I subscribe to some of the youtubers who discuss caregiving and Alzheimer's related topics. I find watching these videos very informative. But you need to follow those who are trusted 'Subject Matter Experts." As in all things, not everyone knows what their talking about.

I am subscribed to 2 YouTube channels: Teepa Snow and Dementia Careblazers

My Youtube algorithm brought this video to my attention over the weekend. I've never watched her before, but I thought her explanation of the 7 Stage Model was very thorough.

https://www.youtube.com/watch?v=0PBmnVb1Z9Y&t=177s

tonyac2 · May 27

Yes, my DH’s situation changed dramatically after he had a stroke deep in the brain stem in 2024. He was diagnosed with MCI in August of ‘23, then had the stroke in July of ‘24, and the stroke seemed to exacerbate the dementia. He never came back. Never regained the ability to walk or stand. I just can’t believe that this is where we are.

paulajurek · July 18

I am so sorry for your loss…..

brupt30 · July 18

The concept of stages is used frequently here, and I find it helpful to understand what may be coming, but none of my DH's doctors have been willing to apply stages to his behavior. And frankly, my DH vascillates between the characteristics of different stages daily, sometimes hourly!

Help understanding the stage

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