Anosognosia: Lack of awareness of dementia

The idea: Sometimes what we think is denial of a diagnosis might actually be Anosognosia, the lack of awareness that there is cognitive decline in oneself. Lin provides a personal perspective.

My name is Lin Cochran and my husband Bill and I live in Salem, SC USA.
When I first suspected my husband had Alzheimer’s, I hoped his problems with getting lost and not understanding written or spoken instructions was due to the stress he was under as a truck driver. He retired a couple of months before his 65th birthday, but to him that just made matters worse. 
Suddenly, everything was my fault. If I would just leave him alone, he would be fine. It was impossible for me to know if he was in denial that anything was wrong, or if he had become anosognosic, a term I had come across in my internet research, meaning “being unaware of illness or deficit.” Credit goes to Joseph Francois Babinski, a French neurologist, who coined the term in 1914.
Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult  to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills or even the ability to move. When severe, the person is unaware of himself to the point he stops bathing and changing clothes.
With some difficulty, I convinced Bill to see a doctor, who recommended Aricept, which he refused to take, and an evaluation by a neurologist. which included an MRI, blood tests and a spinal tap. Wonky genes showed up in his blood and spinal fluids. My fears were confirmed. It was early Alzheimer’s.
Today Bill is taking Aricept, Namenda and Seroquel. He seems to go in and out of anosognosia. One day he blames the medications for how badly he feels physically, and says he is only taking them because I won’t let him live in our house if he doesn’t. The next day he might say he has Alzheimer’s and that is why he is taking the medications. In any case, he minimizes his problems.
His degree of anosognosia seems to vary from day to day and situation to situation. It is difficult to pinpoint when he is anosognosic or just acting out peculiarities. He seems genuinely unaware that he is not always processing written or spoken words, yet he can articulate his opinions clearly, which he does regularly and loudly, sometimes inappropriately to strangers. But for the most part, those opinions are right on target with what the rest of us are thinking, but do not express because our filters are still in place. 
He stopped listening to books on tape because he says he cannot follow the plot, but he still enjoys TV programs that are taped and display closed captioning. He can rewind as needed.
Unlike some Alzheimer’s patients who ask the same question repeatedly, he states the same opinion over and over, unaware that he just said that for the hundredth time. He seems unaware of verbalizing almost constantly, chattering to the dog, singing, recalling long ago events, which he tells very well. His short-term memory is partially intact. He cannot remember appointments, but neither can I.
He considers it perfectly normal to be unable to tolerate a cup being removed from the counter, or to open a cabinet and find new, unfamiliar products. Everything must remain where he placed it, or he gets annoyed, even angry. New things seem to frighten him. His world is shrinking to what he can hang on to from the past. 
His taste in food has reverted to what he ate as a child. Only certain food combinations are tolerated, such as new potatoes with green beans. He will not eat green beans without the potatoes. And he specifically requests certain foods, which he never did before. He would eat what was served and enjoy it. 
I’m sure there must be some battery of tests that could determine to what degree he is anosognosic, but I am just as sure he would never submit to them, nor would I want him to. The diagnostic process has been a nightmare for him, so much so that when I asked him to describe it for this project, he refused, loudly, emphasizing how sick he is of being sick. 
There have been good days since his diagnosis, just not lately. Now I welcome peaceful moments, when we can both forget for a little while, and let things be as we thought they’d be when he retired. 
I started a blog titled The Alzheimer’s Multiverse, to chronicle our journey.
To read more about anosognosia, click on the link below:
Lin Cochran
Published on 07 September 2011
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