Trying to understand anosognosia

GothicGremlin

The other day Peggy said to me, "I know what's going on. I know I have Alzheimer's."

It seemed kind of an insightful thing for her to say given that she's mid to later stage 6.

But even though she acknowledges that she has Alzheimer's, I don't think she fully understands what that means. And I don't think she realizes how advanced her Alzheimer's is, although if told, I think she would accept what we tell her.

Anosognosia feels squishier than ever to me. Is the above anosognosia? Usually what I read on this site is the PWD will say there isn't anything wrong with them. Caregivers often state that their LO is in "denial." And that's not what's going on with Peggy, she's not in denial, she just doesn't ... fully comprehend? Is the inability to know exactly how impacted you are a sign of anosognosia?

Obviously I never quiz Peggy about any of this. I just roll with whatever she says. But I try to make as much sense out of what I'm seeing as I can.

In a way, I guess it doesn't really matter, but I try to understand as much as I can so that I can better put myself in her place. Peggy wants to be seen and heard (as we all do), and me understanding what's going on with her allows me to show her that I see and hear her.

Iris L.

Gremlin, this is very interesting!  I've read that 70% of PWDs have anosognosia, so that means that 30% don't.  I try to post about anosognosia when a caregiver posts about "denial", because I believe the caregivers are waiting for their LO to acknowledge the need for help, which will never happen. 

For a while, I attended Memory Club Support Group with early stage PWDs.  Only one person verbalized that he needed help because he couldn't remember well.  Like you stated above, I think they knew the words "dementia" and "Alzheimer's", but did not truly understand the meaning.  

What I observed is that they were pleasant and sociable, but could not carry on a conversation beyond two or three sentences, because they could not stay focused on what they were trying to say. They were great talkers.  That's why people say they seem normal after a brief conversation.  But very quickly, they begin to talk in circles.  They talk, but don't make too much sense in their speech.  This is why it is so important to learn new ways of communication.  They want to say something, but can't get it out.

Yet none seemed to realize that he or she was not making sense.  I eventually realized that, because for a while, I was getting frustrated myself,  because our conversations went nowhere.  Now I know to keep it simple and keep to one topic and to stay in the present. 

Iris

paulryan

Anosognosia is a neurological disorder that renders a person with a disease or disability unable to be aware of them.

However, anosognosia is a disorder of self-recognition that must be distinguished from denial of illness. Indeed, the denial of the disease is rather a psychological defense process, whereas anosognosia occurs following a brain lesion. For example, this disorder is frequently found in people with Alzheimer's disease or other brain diseases.

Paul Ryan

jfkoc

I think it is all one big ball of wax involving  memory and comprhension. 

The fact remains that little can be gained by the PWD's awareness of their illness.

GothicGremlin

Yes, Iris. This is what happens -- Peggy is still fairly verbal in spite of her primary progressive aphasia. Sometimes her thought processes are clear enough that I know what she's talking about even if many of the words are gone. Sometimes I have no clue what she's talking about. Yet, she thinks she's making sense when she's not.  And it's absolutely true about "not being able to get the words out."  Peggy will often say to me "I can't say it" when she's struggling for a word.

jfkoc - agreed.  I never bring any of this up with Peggy. My post is really about trying to understand anosognosia as it relates to her, so that I can hopefully lessen her frustration when we talk. She's very fixated on all of us knowing that she's doing the best she can under the circumstances. She's fighting as best she can.  My goal is to make sure she feels seen and heard, and to figure out the best way to do that - even if Peggy only feels heard in the moment.

My M.O. is to read as much as I can about whatever it is that I'm struggling with (here, anosognosia), and then distill it all down into something I can use. Right now I don't feel like I'm on solid ground at all.