Where do I find out how to deal with someone in denial, who has Primary Progressive Aphasia? PPA seems rather different than Alzheimer's.

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Gertrude2 Asked March 11, 2024

Where do I find out how to deal with someone in denial, who has Primary Progressive Aphasia? PPA seems rather different than Alzheimer's.

PPA is about language and communication. He has missing words and has no ability to put sentences together. Past memories are there but all running together, his short term memory is very limited. He does not wander and with lots of direction he can still look after his personal care. He was diagnosed 4 years ago. He has been assessed at level 5 for long term care. At this point he is much too aware for long term care.My question is how rapidly does this Dimensia take that he will need long-term care?

Alzheimer's & Dementia Care Decisions Communication & Language Dementia Behaviors Memory Loss

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score 2 · Answer 1

This post is from March.

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I think people respond to questions because it pops up in the algorithm as a similar question. They click on it without checking the date. I have noticed that some people answer questions from 2023.

I don’t know why AC doesn’t shut these questions down. Maybe there are too many questions for them to keep up with. They do close questions down when there is bickering amongst the posters.

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score 0 · Answer 2

My Mom was in LTC and she was there because of her Dementia. She was about stage 6 or 7 and needed 24/7 care. She scooted around in a geri chair. There were a number of people like Mom. Some walked around.

Every person is different when Dementia is involved. With my Mom the decline was monthly. Somevit may take longer.

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score 0 · Answer 3

LTC is usually for people who are actually bedridden or need so much daily attendance and medical care that they require 24/7 attentention (and are not mobile).

A doctor usually assesses this need, sometimes a facility will do this but if someone is still mobile, it's doubtful they'll qualify. They will go into MC.

My Aunt had dementia for 12 years and finally passed away after falling and breaking her hip at age 100. I was in the process of finding facility care for her to be discharged into but she was still getting up out of her bed and chairs while in the rehab so it was going to be dicey. But she passed in her sleep there before she made that transition.

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My husband is in LTC with FTD/PPA. He is not bedridden, but, is not eligible for assisted living because he needs to be prompted for 100% of everything. So, his facility does what I did - every single day you have to explain what the toothbrush is for. The toothpaste goes on the toothbrush NOT the hairbrush, etc. etc. I was burned out. Palliative Care nurses said it’s time to get him in and they did all the work with finding a place - of course, they had to approve him. And, the cost is through the stratosphere, but, he needs Skilled and not AL. This is a rapidly evolving disease not like Alzheimer’s.

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score 2 · Answer 4

I think his doctor is going to be the one to make the best "guesses" but be certain to know--and I am sure the doctor will tell you--each individual is as unique as his or her own thumbprint in how progression goes. I still think MD best for a good guess at prognosis.

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score 1 · Answer 5

https://www.mayoclinic.org/diseases-conditions/primary-progressive-aphasia/symptoms-causes/syc-20350499

PPA is a form of FrontoTemporal Dementia apparently. The above is an article from the Mayo Clinic.

Who assessed him for Long Term Care and what does "level 5" mean in terms of services needed?

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Where do I find out how to deal with someone in denial, who has Primary Progressive Aphasia? PPA seems rather different than Alzheimer's.

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