Do former caregivers get anosognosia?

elainechem · August 29

I'm just wondering - after all that I've been through and all that I've learned, is it possible that I might have insight into my disease if I develop Alzheimer's? Or am I just as likely to give my future caregivers the same hard time that my hubby gave me and my brother is now giving me? Both men angrily denied that there was anything wrong with them, even though they were the only people in the world who had that opinion. I just kind of hope that I won't put my kids through that kind of hell if it happens to me. I hope that I'll be able to listen to reason since I have such experience caregiving.

SDianeL · August 29

they can’t reason. Their reasoner is broken. It’s the disease not them. It’s true for most people with Alzheimer’s or Dementia.

Iris L. · August 29

Anosognosia is due to brain pathology. Anosognosia is not denial. Once family members understand this, they can adjust their caregiving accordingly.

Iris

michiganpat · August 29

I have wondered this too. If I should get dementia and a family member tells me they are worried and why, it seems even if I should have anosognosia, I should remember how my husband is/was and maybe listen to them. Especially if they can give me examples of my behavior. An interesting question.

harshedbuzz · August 29

@elainechem

My guess is that caregivers would be as prone to anosognosia if they developed dementia for a couple of reasons.

Firstly, this is a function of the disease process and not strictly a personality trait. That said, anosognosia hits differently depending on the PWD. Dad and my older aunt were combative and uncooperative in their anosognosia— an offer of hygiene assistance was universally taken as an insult and triggered agitation. My younger aunt and my friend's mom believed they'd done things they customarily did but hadn't in some time. If an offer of a drawn bath or help with a chore was offered, they generally went along with it graciously.

Secondly, the memory losses in dementia tend to be LIFO. With understanding of anosognosia coming later in life, recognizing it would presumably be a "skill" lost fairly early in the disease I would guess.

My 86-year-old mom was dad's caregiver for at least a decade. She did eventually come to understand anosognosia in the process. Mom's always been a bit neurodivergent— she's got serious ADHD and anxiety. DH jokes that "if she developed dementia, how would we know?"

Since the start of 2024 I have developed some concerns about her memory and cognition. We're waiting on a call from the memory center to schedule having completed the preliminary blood tests and imaging.

She was positive for Lyme Disease and was treated which did seem to improve the short-term memory piece a bit, but the word finding is increasingly bad. I am increasingly the designated frontal lobe. I've also noticed some apathy, some inertia/inability to initiate tasks and trouble getting to completion of small projects. Additionally, she spends a lot of time processing her life experiences and shares unpleasant and disturbing things with me I am not always sure are true. I suspect some degree of confabulation. She seems blissfully unaware of these changes.

HB

fmb · August 29

My mother took care of my father with ALZ for many years. He died in 2019. In 2022 she sold her car and house and initiated her move to AL because she no longer felt safe living by herself in her home. (none of her children live close) When she was in AL, she maintained that she was "one of the few residents with all their marbles", even though we could tell that she had cognitive loss despite showtiming during phone calls. When she had a sudden drop in abilities and developed disturbing behaviors in December 2023, she agreed to a transfer to MC, saying she would "be safer" there. However, she still believes she "has all her marbles". Classic anosognosia.

elainechem · August 29

I'm just concerned because my oldest brother now has MCI. It will probably convert to AD within a year. He has NO insight and is starting to fight me. The problem is that I live a six hour drive away from him, so I can't be of help to him on a daily basis. But he has always had the belief that any sort of mental illness or behavior changes due to a brain disease are a moral failing. He has always vehemently rejected the idea that he has a mild form of autism called Asperger's disorder. He totally does. I have a masters in special education and I'm an autism specialist. Plus, I have Asperger's myself and my brother is very much like me in personality. But he has never wanted to hear about it.

My late husband was the same way. He didn't think that a good Christian could ever have a mental illness. It didn't help if I pointed out that good Christians got cancer.

Anyway, I'm wondering how much of their lack of insight could actually be due to denial rather than totally being due to the brain disease.

My brother is 68 and has been showing signs for a 2-3 years. That's on the edge of being early onset. I'm 65. If there is some genetic component here, then I might be at risk. I'm really hoping that, if I start to show signs, then I won't give my kids the hard time that I got from my husband years ago, and now from my brother.

LindaLouise · August 29

This is an interesting question and one I've thought about. I think that as a caregiver we would be more aware at an earlier stage of the disease. I know for DH, by the time we got to a neurologist, we were at a 13/30 MoCA score and anosognosia was fully developed. Years earlier, he had wondered if he had increasing ADHD or something else going on - but that was during the Covid years and by the time we could get it checked out, he had long passed the time when he was aware that something was amiss. He was in his early 60s when this was going on, and I don't thing Alzheimer's was even on the radar as a possibility. I think if we, as caregivers, got a feeling that something was not quite right, we (speaking for myself!) would hurry to get things figured out so I would know early what I was facing. I also find the moral/Christianity issue quite compelling. I know my relatives see brain function in later life as a source of pride, spiritual strength, etc. My dad, who passed at 92 with dementia, maintained his sweet personality, and the family believes that dementia "reveals" who you are at your core. So - my sweet DH has been revealed to be aggressive and angry, and agitated. Of course, I don't believe this is his true self at all, but the bias is there. I think all the articles about what to do to promote brain health are also misleading and make it sound like somehow, dementia is the fault of the person who is impacted. All of this is part of the price we pay for having a LO with this disease. Financially, emotionally, physically and spiritually - such a toll is taken on caregivers - but of course, we don't have the actual disease and seeing our LOs suffer is clearly the most heartbreaking experience of all…

Iris L. · August 29

Elaine, anosognosia is not only seen with dementia, but with other neurological conditions, such as in some stroke patients and in patients with schizophrenia, although we categorize schizophrenia as a psychiatric disorder. The presence of anosognosia may be variable, meaning a patient may be aware of having some memory or cognitive deficits, but will not be aware that the condition is a disease, that it is progressive and terminal. They are not aware that they are not functioning normally, and that they need help from another person. They just are NOT AWARE. They don't see a problem. A person in denial sees a problem, but refuses to believe that the problem is bad and causing trouble. The purpose of psychotherapy is to get the patient to develop insight into his/her problems and his/her ability to make changes.

I post a lot about anosognosia for the benefit of the caregivers, so that they can stop trying to convince their LOs that they need help. You cannot convince someone with anosognosia. It is up to the caregiver and family members to be aware and to change their approach to the PWD. Unfortunately, most people have no conception of anosognosia and spend a lot of time frustrating themselves. In your case, it would behoove you to alert your future caregivers to the reality of anosognosia, so that they could recognize it and begin using work-arounds and not frustrate themselves, or at least limit frustration. They probably won't believe you now. But perhaps you could print out and article and leave it with your instructions.

I take it your brother lives alone? You will probably have to use some of the work-arounds to get him medical attention. In the meantime, check out his environment. How is he managing his home and his finances? Is he still working? Has he had an annual performance review? You might see if he has had any warnings of poor performance. The alternative is to wait for a crisis. But you will have to be prepared for what you want to have accomplished after the crisis.

There are a lot of risk factors for dementia, some can be worked on and some cannot. I am working on what I can work on to help my brain not get worse. You might have seen my posts about my poor sleep. Poor sleep impacts cognition. This really bothers me!

Elaine, if you get a chance, you might want to read my thread about Mimi S, who was one of the original members of the boards. Her plan was to be proactive and to locate a Memory Care facility close to her child in another state, so that when the time came, the plans would already be in effect. Mimi also promoted Best Practices, and wrote about how they helped her. She was interviewed on PBS, but I cannot locate the link after the board removed the older threads. Mimi was a huge inspiration to me!

I won't go into morality. But I believe salvation is a blessing and I am glad to be saved.

Iris

Nowhere · August 29

My husband watched his dad and three siblings die with the disease, and he did not want to get “it”, told me if he did to put him in a good home as he didn’t want to put me thru “it”. One would think he’d recognize he had “it”, but alas, no. He has anosognosia and now with loss of short term memory has forgotten his siblings and father have had it and have passed.

elainechem · August 29

https://alzconnected.org/discussion/comment/221089#Comment_221089

I take it your brother lives alone?

Yes, he lives alone. His wife divorced him last year, most likely because she saw the early signs and didn't want to deal with it.

You will probably have to use some of the work-arounds to get him medical attention. In the meantime, check out his environment. How is he managing his home and his finances? Is he still working? Has he had an annual performance review? You might see if he has had any warnings of poor performance. The alternative is to wait for a crisis. But you will have to be prepared for what you want to have accomplished after the crisis.

He retired in 2020 after working as an aerospace engineer for 35 years or so. I have no idea what his performance reviews might have said. He won't show me. I have no idea what his finances look like. He won't give me access. I don't know whether he takes his prescriptions as directed. His house has three levels - a LOT of stairs. I fear that I will have to wait until there's a crisis before I can do anything.

Do former caregivers get anosognosia?

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