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Non Fluent Primary Progressive Aphasia (nfppa or navPPA / ppaG) - how to communicate in later stages - clarification much needed!

rmabo

Registered User
May 19, 2019
25
TL;DR: my mother is in the later stages of nfPPA and if you know of little-known 'tricks' on how to communicate, I need to hear them... please.

Hi, I really hope you can help me because I'm starting to become desperate. My mother was diagnosed with cognitive issues back in 2016, Alzheimer's in 2018, and following a lot of efforts we were able to narrow it down to 'fronto temporal dementia' and 'non fluent primary progressive aphasia'. Last mmse score was 13.

She and I (she has no other family or friend) have been soldiering on and fought this disease tooth and nail since the very beginning. She's in the right place (dedicated assisted living), with the right staff (including a private caregiver) and takes all the right meds. I try my best to construct a social life for her.

The aphasia was tough to deal with psychologically from the beginning. Eventually she became almost mute but we could still 'communicate' in the sense that she could understand me. As you know, that disease eventually robs you from the ability to comprehend both written and spoken language and now she's turning not only mute but also looks confused despite my best efforts at non-verbal communication.

I know you probably already know this but for the sake of completeness I tried various other ways to communicate including both tools and technology where you can click icons on a tablet, exchange printed symbols on cards etc. Over time though, the icons have lost their meaning and the tools are more of a hassle than fun, so we had to stop that.

Which leads me to today: for the first time in caring for her over 4 years I felt she had lost the ability to even express something was wrong - and while in the past we both were able to 'shrug it off' and find alternative ways to help, this time, I wasn't able to resolve her issue, whatever it might have been. It broke my heart.

If you know of absolutely anything that might help continue 'communicating', no matter how basic, please do share, no matter how far fetched it might sound.

Thank you.
 

rmabo

Registered User
May 19, 2019
25
Thank you so much for your reply @karaokePete! I'm so sorry to hear about your wife, and I hope you'll both find some useful advice and solace.

I'm afraid - just like yourself I imagine - I'm all too familiar with the content of that file, and the countless other 'high level' descriptions provided by various societies or forums. I guess the bottom line is that I'm terrified of this 'new phase' of the disease - and just need some 'fact checking' regarding a few things that are circulating around PPA.

In particular - I need to understand whether or not:

a) sufferers of PPA within the context of FTD or Alzheimer's will to a high level of probably be unable to also understand what is being said to them.

b) if this lacks of comprehension indeed does extend in the non-verbal realm of communication, for example, symbols written on cards or electronic 'augmented speech' applications designed for aphasic patients recovering from stroke.

Sadly, in my mother condition it appears to be the case: she no longer understands what I say, while electronic gizmos and apps have stopped working because 'a green arrow on white background' or ' a red cross (X)' no longer seem to mean 'OK' / NOT OK to her.

And obviously her being a case of FTD/PPA she shows very little of the usual Alzheimer memory issues etc... so we take the 'full force' of the humiliation of not being able to understand even a kid's tv show while she does remembers she was a qualified, intelligent medical staff in the not-so-distant past.

Any pointers you could send my way would be hugely appreciated. Thanks again!
 

karaokePete

Registered User
Jul 23, 2017
5,290
N Ireland
Like your mother, my wife has to a great extent lost the ability to understand what is being said and signs/instructions have become somewhat meaningless. Unlike your mother, my wife has lost her ability to form new memories. I'm at the stage of steering and pointing when I help her to do anything. Little tricks like writing on kitchen appliances etc., have fallen by the wayside

My wife was educated to Dip HE level so the whole thing is just so sad.
 

Huckleberry

Registered User
Nov 27, 2017
15
Following with interest. My mother has lost all speech and ability to communicate other than through physical aggression. I do hope you are able to find something useful for your relative.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
TL;DR: my mother is in the later stages of nfPPA and if you know of little-known 'tricks' on how to communicate, I need to hear them... please.

Hi, I really hope you can help me because I'm starting to become desperate. My mother was diagnosed with cognitive issues back in 2016, Alzheimer's in 2018, and following a lot of efforts we were able to narrow it down to 'fronto temporal dementia' and 'non fluent primary progressive aphasia'. Last mmse score was 13.

She and I (she has no other family or friend) have been soldiering on and fought this disease tooth and nail since the very beginning. She's in the right place (dedicated assisted living), with the right staff (including a private caregiver) and takes all the right meds. I try my best to construct a social life for her.

The aphasia was tough to deal with psychologically from the beginning. Eventually she became almost mute but we could still 'communicate' in the sense that she could understand me. As you know, that disease eventually robs you from the ability to comprehend both written and spoken language and now she's turning not only mute but also looks confused despite my best efforts at non-verbal communication.

I know you probably already know this but for the sake of completeness I tried various other ways to communicate including both tools and technology where you can click icons on a tablet, exchange printed symbols on cards etc. Over time though, the icons have lost their meaning and the tools are more of a hassle than fun, so we had to stop that.

Which leads me to today: for the first time in caring for her over 4 years I felt she had lost the ability to even express something was wrong - and while in the past we both were able to 'shrug it off' and find alternative ways to help, this time, I wasn't able to resolve her issue, whatever it might have been. It broke my heart.

If you know of absolutely anything that might help continue 'communicating', no matter how basic, please do share, no matter how far fetched it might sound.

Thank you.
I’m so sorry for you both
you will learn to look for micro signs. The smallest of movement around mouth & eyes are good indicators.
ask the question very simply & wait it takes time to process the words before the response

Reiterate & repeat.
Dad responded best to what the carers called my calm voice, the sort you soothe a frightened Rabbit or child with
Low key & simply

That’s all I have I’m afraid
X