“My wife is in stage 4 Alzheimer’s. She is in denial about her Alzheimer’s. Should I remind her that she has Alzheimer’s and educate her about the disease?”
I received the following question from a reader:
“My wife is in stage 4. She is in denial about her Alzheimer’s. She is a Christian and always believes Jesus will heal her. I wonder, should I remind her she has Alzheimer’s and educate her about the disease? She is willing to join clinical trials but gets upset when they complete the memory test on her. At present her favorite activity is doing word search games for hours. Should I try to educate her about Alzheimer’s? She was diagnosed in May 2015.”
Denial in Alzheimer’s Disease
It sounds like your wife is experiencing “anosognosia” (pronounced ah-no-so-NO-see-ya), which means she is completely unaware of her memory problems. This is different from denial. Here is how denial is different from anosognosia. When I am in denial about something, I choose to ignore a scary problem or to see the scary problem as “not so bad” so that I can temporarily deal with life. Denial is a defense mechanism. When I am finally mentally able to handle the situation, my denial breaks. This is because deep down in my brain, I knew that I was facing a scary problem. I had to mentally “bury” the scary problem until I was able to face it. Believe it or not, denial can be a healthy TEMPORARY coping method. People get in trouble when denial becomes a way of life, but that is another topic for another day!
Anosognosia, on the other hand, happens because I forget that I forgot. If I am unable to remember that I have a scary problem, then I simply do not have a scary problem. I forgot that I just asked you the same question 5 times. I forgot that I nearly wrecked the car. I forgot that I got lost coming home from the store yesterday. Now, when you tell me that this is the 6th time I’m asking the same question, I become angry because NO IT IS NOT! I’VE NEVER ASKED YOU THAT QUESTION. THIS IS THE FIRST TIME I ASKED IT! Or, if you tell me that I got lost yesterday coming home from the store, I’m going to look at you like you are crazy because I don’t remember getting lost yesterday. What the hell are YOU talking about???
Some people with dementia, usually vascular dementia, maintain some self-awareness and realize that they have memory problems. These people may become sad and depressed because they can feel their memories slipping away. However, for many who have Alzheimer’s Disease, they lose that self-awareness as it pertains to their memory problems. Without that self-awareness, because of “forgetting that I forgot,” reminders and “education” is not a good idea.
Entering Her Reality May Work Better
Now that I’ve explained the difference between anosognosia and denial, I’m going to have to say that educating your wife about “her” disease would be fruitless. She will probably become upset and angry with you. Another approach may be to use her value system as an inroad to getting her cooperation, also known as “entering her reality.” There is a passage, John 14:12, in which we are the hands and feet of Jesus (I’m terribly paraphrasing here). Perhaps you could use that scripture passage to say, “We can serve others by being in research studies.” If she becomes upset with the memory testing, ask the researchers to repeat that scripture passage to her. Sometimes the people doing the testing are a little bit task-focused and do not realize they are getting the person with memory problems upset.
Exercise Mind AND Body!
I see that she enjoys word-search games. Many people who loved to read and do cross-words gravitate to the word-search puzzles, because reading is an overlearned skill and this is something that they can do with success. Keep encouraging this activity. Daily exercise is absolutely important; exercise has been shown to increase the production of nerve cells in sections of the hippocampus, which is critical for memory. If your wife resists some of these activities, have a bible quote ready in a joking and kind manner: perhaps something about honoring the temple of the Holy Spirit by keeping the body healthy.
Staging Not Always Helpful
A word about the stages: Please do not get hung up on them. Reisberg published those 7 stages decades ago as a RESEARCH tool, not a clinical one. People do not fit in little boxes. I’ve had individuals who were classified as a “6” complete a task that they “weren’t supposed to be able to do.” Focus on your wife’s strengths! You know her better than anyone, and you have the creativity to find ways to make this journey meaningful to both of you.
Thank you for asking the question and allowing me to publish my response. For my other readers, please ask your questions. I’ve learned from teaching nursing and medical students that the rest of the class is having the same problem but only one person usually asks the question!
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.