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It is a common scenario: you think you are doing just fine, but family or friends can see that you are having significant memory loss. Maybe you have even gone to the doctor and been told you have memory impairment, or a diagnosis of Mild Cognitive Impairment or dementia, but you don't remember it or really don't believe anything is wrong with your memory, particularly not when compared to others your age. Yet, your family is convinced of it. If this is you, you may not have even found our blog, but just in case you (or your loved one) did--You and your family are not alone!
At this point, loved ones often are frustrated with the person with memory loss (and you are frustrated with them always mentioning it!). "If you would just admit that you had a problem, maybe we could do something about it." They think you are being stubborn, or just refusing to see the truth. You cannot see what they are talking about and think they must be mistaken or are overly critical. Everyone thinks you are being defensive, and tensions start to rise around the topic of your memory and ability to take care of your day-to-day life.
BUT, the issue is, this is not "psychological defensiveness," a refusal to see the issue because of pride or stubbornness, or an inability to face the truth because it is too painful. Rather, this "refusal" to admit to memory loss or inability to see it isn't defensiveness at all. A person with MCI or dementia often has another change in ability - the ability to see themselves clearly. Just as memory is a type of cognitive thinking skill, like language, executive function, attention, or concentration, we have metacognition, or the ability to step back and see oneself clearly, which is also a thinking skill. And, this thinking skill can frequently be impaired in our patients with MCI or dementia. When it is, we call it anosognosia, or "lack of knowing."
On the face of things, it isn't possible to distinguish anosognosia from defensiveness. Both result in a person denying they have problems. Maybe early on in MCI a degree of psychological defensiveness is at play, and the person does not want to admit to their memory loss--This is often a difficult adjustment for our patients. However, much more likely, and particularly as the condition becomes worse, it is far more likely this is anosognosia, and the person with memory loss just cannot see it. And, just as a person may remember something from time to time despite memory problems, they can also seem to have awareness of their memory loss at times, but not at other times.
Some choose to think of this lack of awareness as a blessing (if one is to be had) in the process of a disease like Alzheimer's disease or other causes of MCI or dementia. In other words, maybe it is a kindness to the person that they are not aware of how impaired they have become. Anosognosiais usually much harder on those around the person with memory loss. Loved ones fruitlessly try to reason with the person with MCI or dementia about how they have problems and need help with certain things. Fruitlessly, because the cognitively impaired person does not see the memory problems in the first place, and perhaps also does not have the reasoning skills to come to the same conclusions, even conclusions that are in their best interest. Or even if they agree they have memory problems and should try various treatments in one conversation, that may not "stick" in their memory for a future conversation.
There are no easy solutions in how to handle this situation. For one, we encourage loved ones to pick their battles. It doesn't help if they are always pointing out examples of your memory loss. They should really only push the issue of memory loss when it is absolutely necessary, like for safety. Also, both you and your loved one can practice communication techniques around memory loss as we've written about before (examples are here and here).
But, I think it goes a long way just to understand the concept that there is a difference between psychological defensiveness and anosognosia. It allows a person to blame the disease, and not the person. The disease is causing a lack of awareness of the problem, not willfullness or prideful behavior. This realization helps place the frustration or anger towards the right source--the disease, not you!
We'd love to hear your thoughts and stories about how you've coped with this!
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Thank you for this in-depth explanation. Our family often have discussions around this topic concerning my husband. One of his children, who does not live near us, always think he is just being stubborn. I suppose it is more difficult to see the changes I am witnessing when one only has occasional phone conversations. I shall share this blog post so that our family can all be more understanding and supportive of my husband. He has Lewy Body Dementia and the disease is progressing as it is expected to do. It certainly is a difficult journey.
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7 ReactionsYour mention of those occasional calls from relatives who live afar brought memories of my rage to the surface. We went through this with my dad more than 20 years ago, when dementia was rarely discussed. I wish I had been forewarned about these relatives, then I could have simplify nodded or said “uh-huh,” knowing it was to be expected. By sharing your experience, perhaps you have spared someone the agony of dealing with this aspect of the journey. Ultimately, those of us who understood what was happening ignored the rest and helped Dad enjoy his remaining time the best we knew how.
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5 ReactionsThank you for understanding, @leslieeve, it is tough. Sounds like you know that all too well. Those of us who have the responsibility and privilege of walking this journey with a loved one can't help but learn more than we ever might want to know... about the disease... and individuals we are related to. One quickly recognizes those who want to learn, understand, and come along beside you -- and those who just make judgemental statements. Ultimately, we all probably want the best for our loved one who is suffering.
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5 ReactionsThank you for your comment. I'm glad you found it helpful, and I hope it is helpful to family as well!
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4 ReactionsI agree with this so much. My husband has MCI and my son schizophrenia. The same thing happens with schizophrenia. It’s the disease not the person that is the problem.
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6 Reactions@fireisland, welcome to Connect. You're so right. It's the disease, not the person. How does their denial or lack of awareness affect you?
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2 ReactionsThis is so helpful. My husband acts like there is nothing wrong and he is really losing some very important social and memory skills with MCI.
To know that his metacognition is effected and that this can be a classic symptom. The term anosognosia describes his loss of a very important thinking skill
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3 ReactionsHello all,
Thank you, Your topic is helpful. While i have heard of anosognosia and tell myself several times a day that “hes not being argumentative on purpose” it seldom helps me. I pray daily for a gentler attitude and patience. We bicker way too much and i feel very lonely due to that. I have no one to confide in, they just want to hear happy things from me so that’s who i try to be.
MCI with petite epileptic seizures that are under control with meds. Diagnosed one year after our marriage 14 years ago. His memory was bad prior to our marriage so hes had MCI at least 15 years now. He's healthy and as busy as a bee, volunteers, and tries to solve problems that we don’t need solved! I have not done well alllll these years. Various stages of grief to say the least. He thinks his only problem is forgetfulness. I feel like a prisoner of a high functioning, muddled brain man.
No i don’t agree with the phrase “its a privilege to be a caregiver”. Its a horrible disease that i do not want anyone to be part of! My husband had brain injuries in childhood that Dr. think is his cause but they do not really know. Trying to find a neurologist so i have someone monitoring his symptoms. I believe he will outlive me and thats does concern. He is 69 and i am 67.
Hugs to you all for letting me rant.
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7 ReactionsI agree with you that this is not a privilege, it just happened and here we are so I'm left to deal with this mess.
We need to rant in a safe place; go for it!
I'm in the angry stage of grieving my once-intelligent husband who no longer touches me nor engages me in conversation. I miss him and he's right next to me.
Hugs all around.
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6 ReactionsI feel your loneliness. I’m very sorry you both are experiencing this pain.
My husband does talk but logic and or memory loss often leaves me frustrated. On my good days i just smile and agree. On my bad days i try logic or reasoning. I often here back “thats your opinion”, or i disagree, or No thats not correct and you don’t get to tell me what to do”.
Then i pull my hair out because its factual not opinion. I wish i was calm and clever in my replies so we could work together peacefully.
😢
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