With Alzheimer's, Denial Isn't Always What it Seems

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Quite a few comments over the past several months have mentioned the difficulties for caregivers when the person with dementia "refuses" to recognize his impairment.

Understandably, this can drive some caregivers absolutely crazy. The patient with considerable financial resources persists in disastrous judgments. The now-dangerous driver insists on driving. Important issues about the future can't be addressed. Both caregiver and patient get frustrated and angry.

The term for this lack of insight is "anosognosia," from the Greek words nosos, "disease" and gnosis, "knowledge" while the prefix a- changes it to a negative: "no knowledge of the disease." It's a condition in which a person suffering from neurological disability seems unaware of it.

From my medical training, I'm familiar with this condition when caused by a stroke: victims remain unaware of their affected side and will deny that they're hemiplegic. But it's also common in Alzheimer's.

Most caregivers understandably interpret this condition as psychological denial, but it's not. A blogger on the Alzheimer's Disease International website writes, "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."

Research has shown that this condition is due to physical damage to specific areas of the brain. The patient has no more ability to recognize her symptoms than she does to lift her arm.

When Alzheimer's damages these areas of the brain, the patient simply cannot recognize her impairment.

The importance to the caregiver of understanding the cause of this lack of awareness is obvious. Trying to cajole or therapize or intimidate a person into recognizing his or her disability will fail, and will lead only to frustration and anger in both caregiver and patient.

Recognizing that the patient has no control over his denial, of course, won't change the practical problems, but it might help prevent the blaming and mistrust that so often results. Realizing that your loved one can't see that their mind is failing, and that no amount of reasoning or nagging is going to make any difference, might increase compassion and decrease frustration.

Although the problem may decrease as the Alzheimer's worsens, there is no known treatment. But, as the author of "Contented Dementia" suggests, in the context of other problems, trying to see the world from the perspective of the person with Alzheimer's will help.

How might it feel to have others harping on your incompetence when you know yourself to be unimpaired? What's it like to be unable to accomplish something important when you see no good reason why you can't?

Is it possible for you, the caregiver, to create an alliance with the patient to reduce his frustration? Can you find a way to "agree to disagree"? Can you feel less of a sense that you're betraying the person with Alzheimer's when you arrange for authorities to take his driver's license away (ideally without letting the patient know that you were responsible).

No amount of understanding, of course, is going to make it easy for you to respond to this condition, but it may make it possible to stay in a better relationship with the person you love.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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6 Comments

This was very interesting and timely...i think It may explain my mother's situation perfectly..I am, what I call, my mother's interpretor of life.. she lives with me and my family and we have a caregiver for her physical needs but I do everything else... She hasn't walked since June yet she insists she does so every night! She is on in home Hospice yet she insists she isn't dying ( her physician of over 30 years put the order in) as she has a host of ailments from which she will never improve... I thought her 'denial' was her way of self preservation but deep down I wondered... One of my brother's and some of her friends don't think there is anything wrong as she has some brief periods where she seems like her old self....but I see her 24/7..thank you for writing this...
This article is wonderful! My mother thinks there is nothing in the world wrong with her besides being 77 years old. I know it won't make it better but it will definitely make me feel better about it. Thank you!
This seems to be the situation with my husband. It is very difficult to deal with because he continues to insist he can lead workshops and major events like he used to do, and is always saying he is going to call people to get that set up because he thinks there is nothing wrong with him except age-related memory loss at 78. I worry about when he tries to contact people and bring them in to work on these events with him--he can't follow through and when he does try to lead a group he repeats himself continually and gets off track, etc. So far, he hasn't been able to complete any of his plans--he forgets or gets distracted. But every time he starts talking about it, he gets so intense and I don't know what to do if he really does call these people! I, too, thought he was just in denial because he couldn't or didn't want to face the concept of dementia, but now I'm thinking that this is probably what is happening. He acknowledges his memory loss and it frustrates him greatly, and occasionally he will admit that it frightens him, but most of the time he thinks he is just fine.