Could the doctor be wrong about disease stage?

akc783 · June 11

The title says it all. I am wondering if the doctor could be wrong about what stage my mom is at. The last time I took her to an appointment she had one of her better days and I didn’t feel like it was indicative of how she normally is. Doctor said she is borderline between “mild” and “moderate” but I think she is definitely more on the moderate end. I can’t tell if the doctor could be wrong or if my perception of what mild/moderate looks like is off.

CaliforniaGirl-1 · June 11

I am sure you will get better answers than this but here is my two cents::

1-There is something known as show timing which refers to the fact that some PWD can present much less advanced than they actually are on certain occasions like medical exams or being interviewed.

2-I believe at times the whole stage/mild/moderate/extreme question is not as cut and dried as you might think. Because PWD are losing functionality in different ways at different rates. And it isn't consistent and they have better and worse days. One day they may not remember something or someone and the next day they may for a while.

You might give the doctor a call and talk to him or her about it.

H1235 · June 11

This will probably be more accurate than a doctors quick evaluation.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Quilting brings calm · June 12

Doctors tend to err on the side of saying the PWD is not as far along. Mom’s neurology NP would talk to her for a few minutes, then give her the 10 minute MMSE test. Then tell me she was mildly cognitively impaired ( stage 3 of 7) based on her score. When I knew she was in stage 4, had been for a while and was heading toward stage 5. The NP wasn’t there when she exhibited many of the behaviors of those stages. Mom seemed to be able to hold it together for short doctor appointments.
It became a routine to go back every six months and get told she was still at stage 3. Finally it got to a point where both mom and I were frustrated with all the doctors she had and all the appointments. I asked her PCP if he was willing to prescribe her Donepezil, her sertraline and her mirtrazipine. He said yes, so I dropped her neurology NP and her psych residency clinic. The latter didn’t do counseling, only medication so there was really no need to see a psych resident if the PCP could do it.

SDianeL · June 12

search for a chart online for the 7 stages of dementia that shows behaviors. Look at where most of her behaviors fall. She may not exhibit all the behaviors in a stage, but it will give you a better idea. Doctors don’t like to give stages. It helped me to keep a list of my DH behaviors. I didn’t let him see the list as he would not have believed he had those behaviors. I sent his behaviors monthly to all his doctors vis the patient portals. It helped me communicate with the doctors.

akc783 · June 12

Thank you all for your comments. This is extremely helpful!!! I feel validated.

JulietteBee · June 13

https://alzconnected.org/discussion/73257/could-the-doctor-be-wrong-about-disease-stage

Please watch the video below, to refresh your perspective. You would be the one best to stage your mom. I am an R.N and benefitted greatly from this refresher.

Our PCP finally tested my mom, after years of my telling him she wasn't quite right, cognitively. He says she is in "mild decline."

Interestingly, I had my 2 other adult family members watch it after I did. I then had my darling mother (dementia patient) watch it, as she is an R.N as well.

After watching Tam's video, I believe my mom is nearing the end of stage 4, going into stage 5. My child thinks the same. My husband places her squarely in stage 4. My mom sees herself as stage 5 going into 6.💔

https://youtu.be/tansVVDM0fE?si=eOn0YTquQHXrnIEn

akc783 · June 13

https://alzconnected.org/discussion/comment/245493#Comment_245493

I cannot thank you enough for the video. Out of all the videos I have watched, and I have watched a LOT… this one was the most helpful.

I especially related to the part where she said Stage 4 brings about urban isolationism.

JulietteBee · June 14

https://alzconnected.org/discussion/comment/245503#Comment_245503

You are welcome! I am happy to help my fellow offspring of a PWD. This is such a difficult journey.

Some days my mom acts/looks so "normal". I believe her long term memory of being a professional nurse causes her appropriateness to be exhibited at her doctors' appointments, while her outlandish, head scratching behaviors, and flawed thought process is reserved only for me & mine.

Anonymousjpl123 · June 14

100% agree with the above. My mom showed up as a solid stage behind where she actually was in her disease at doctors offices (it’s called “show timing”). It was very confusing but is quite common.

harshedbuzz · June 14

@akc783

As the caregiver closest to your mom, your sense of where she is along the arc of disease progression is likely the most accurate assuming there's no denial in play.

Showtiming can certainly make a PWD seem more with-it during a quick appointment than they do day-to-day. My dad could showtime like there was an Oscar at stake.

Cognitive reserve can also make a PWD less further along in the disease progression that they actually are. Dad brought a lot of intelligence to his dementia and was able to perform better than expected on the quick screening tests like MMSE and MoCA. Dad scored in the MCI range on his last screening about 6 months before he died from aspiration pneumonia. He bragged all the way downstairs to the valet stand where he got into a car being driven by some little old lady the minute I turned my back to turn in our ticket.

And finally splinter skills can also fool some people. Dad remained verbal to the point of conversation until he died. It led professionals to misjudge how impaired he was.

HB

Could the doctor be wrong about disease stage?

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