I learned a new word today - anosodiaphoria

elainechem · August 24

This means that a person is aware of their disorder, but they don't care. It's more common in people with brain injuries and frontotemporal lobe dementia. Anosognosia means that they are unaware of their condition or can't acknowledge how serious it is.

The literature says that it's sometimes difficult to distinguish between the two. My question is, does it really matter?

Iris L. · August 24

How to determine if a person doesn't care, or is actually resigned to the fact that they have the condition, and don't see that there is anything they can do about it? Someone might say that I don't care about the state of things around me, but that isn't so. I do care, I just cannot do anything right now about things, and I'm not going to stress myself out about why I can't get anything done.

Professionals like to make up jargon, butmost of them don't even know the meaning of anosognosia, or the difference between anosognosia and agnosia. Now there is a new word for them not to know.

Iris

sandwichone123 · August 24

I suppose it would make it easier to talk in front of them. Otherwise, not much.

elainechem · August 24

https://alzconnected.org/discussion/comment/220411#Comment_220411

I began to speak openly about my hubby's Alzheimer's when it became clear that he no longer understood what I was talking about.

Iris L. · August 24

Here's another jargon word: abulia, meaning lack of initiation or motivation. The neuropsychologist told me I had Apulia. She was right, to a degree. But I did have motivation to seek out consultation with her, to complete the extensive neurocognitive testing, and to return to learn the results. But I believe I don't have motivation because I don't have the energy.

Iris

elainechem · August 24

https://alzconnected.org/discussion/comment/220414#Comment_220414

I think that this lack of energy is common to anyone who is dealing with a chronic medical condition. And you've been dealing with a lot for a long time. 💓

Iris L. · August 25

Yes, I have been, Elaine. And last week I got a new diagnosis, diastolic dysfunction. But I think it is already into heart failure because I am having so much difficulty with my basic activities. One of the earlier neurologists said I was malingering. That's a doctor's term for faking. I have not been faking all these years!!!

Iris

GothicGremlin · August 25

I'm so sorry you're having to go through all of this, Iris.

@elainechem It mattered for me - it meant that my sister Peggy and I could discuss her situation, at least for a time. Peggy had Alzheimer's and FTD, so I was able to discuss both of those things with her until she was about 3/4 of the way through stage 5. As to whether or not she "cared" … She was afraid that we would all leave her and she'd be left to fend for herself, but she never looked up Alzheimer's or FTD to see what either of those diseases were about. I'd say she accepted her diagnosis, and was afraid, but I'm not sure that's the same thing as "cared." But yeah, her knowing that she had Alzheimer's and FTD gave me some time to gather all legal documents, and get her input (like for putting together her will) without freaking her out.

Until 3/4 of the way through stage 5, she would sometimes ask me if something she was experiencing was an "Alzheimer's thing." I'd respond with a "yes" or "no." Our arrangement was that I wouldn't offer information unless she asked me about it.

MelissaNH · August 25

My husband has anosognosia and I hate it so much right now as we're somewhere in the middle stage and I feel so alone in this. He is here, but not here. Not all of him, anyway. This is the symptom that makes me feel like I'm going to lose my mind. It's a special kind of psychological hell. He's still has a lot of intelligence and hasn't lost his memory in terms of people, places and things, but he lacks insight, emotion, critical thinking and judgement. It's really hard. I also blame the anosognosia for all the pain and suffering we incurred for all those years that this silent killer was slowly rearing its ugly head. My husband didn't communicate any of these changes and deficits because he couldn't. That is mind-boggling to me. I just can't imagine as I am sooo self-conscious and self-aware, especially when it comes to what is happening in my mind and body. It's hard for me to wrap mind around. I feel angry a lot, but a part of me knows it's not his fault that he lacks insight and I do my best to not feel the anger or resentment. If he had anosodiaphoria, I think it might be even harder for me to understand and accept, but there would also be that awareness (on my part) that the "not caring" (apathy?) is also not his fault because the disease is causing that. I think? At first I thought it would matter to me, but after thinking it through, I guess it doesn't because the person is likely reacting the same? And as the spouse, this is incredibly painful to deal with - especially alone. So I guess it doesn't really matter in the end because it sucks either way and it isn't fair. The only thing that might matter is having a better understanding of what is happening/going on. Part of me feels I'd be more angry and resentful in the case of anosodiaphoria, but it's hard to say. This is just hell and I'm so sad for all of us.

elainechem · August 25

https://alzconnected.org/discussion/comment/220440#Comment_220440

It's great that your sister had some awareness about what was happening. My hubby had anosognosia from the start. I could never discuss it with him or he would become furious. It was heartbreaking. My beloved husband had a terminal illness which would eventually end his life but I was never able to have a conversation with him about it. I had to guess what he wanted at the end - burial or cremation, what kind of service, etc. He had younger onset AD and we had never had a talk about those issues.

My brother is still in the MCI phase of AD, probably. Sometimes MCI stays the same or improves. But he has no self-awareness. All of his tests of memory were in the 1st to 3rd percentile. Basically, he can't remember that he can't remember. But, at least, caring for my husband taught me how to care for my brother.

sandwichone123 · August 25

@Iris L. I think doctors use labels like that when they don't have answers. It's too hard for them to say they don't know, so they say it's all the patient's fault.

Iris L. · August 25

You could be right, Sandwichone.

Iris.

GothicGremlin · August 25

Early onset is so very difficult, @elainechem . I'm so sorry about your husband, and now your brother. It really is heartbreaking.

My sister was also early onset. She was diagnosed one month before her 59th birthday. I spoke with her ex-manager on the phone during lockdown and she told me that Peggy had been showing symptoms (again, in hindsight) as early as late 2010-early 2011, so Peggy would have been about 52.

Peggy didn't develop anosognosia until almost mid-way through stage 6, maybe even a tad later. Maybe that was the influence of the FTD? Who knows though. FTD is a different beast.

ricardo · August 25

I’m a new member with very few symptoms which I’m fortunate for

Amelia F McNeely · August 26

My daughter has been diagnosed with early onset. She's 55 and has had MCI since she was in her late 40's. She doesn't want this disease and I think most of the time pretends she doesn't have it. She says she wants to die. She has good days and bad days regarding communication. She can't handle her finances. Getting her interested in doing anything is difficult. Any ideas? I'll ask her to put napkins at each person's place and she puts them all at hers. Her executive function is pretty much gone. She loves golden retrievers and had four of them. Now she fixates on dog sites and watches dog videos all the time.

I'm unclear on what to expect. Day cares don't seem to fit her need. Everyone is so much older and most of them live in their own world. I'd like to find a place that has classes - like a school - to keep her moving and interested. When and why do you place a person in a memory care facility?

I learned a new word today - anosodiaphoria

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