Early in our journey, I noticed that Deena and I had very different recall about some specific experiences. I would remember an interaction with someone one way and Deena would have a completely different version of the same interaction. She was so convinced that her version was correct that there was no way to have a discussion about our different views of the event.
These interactions really made me feel crazy sometimes. How could my recall of the event be so drastically different? And since there was no one else here to get another perspective on the issue, there was no way to get any resolution to the problem.
At one point, I took a class through the Alzheimer’s Association. During the course of one session, another person in the class described how her stepmother, who had been diagnosed with dementia, would often recall a conversation or event very differently than anyone else did. And when other family members would discuss the conversation or event, their collective memory was the same and different from the stepmother’s memory.
When she was done relating the situation, the instructor started to move on to the next topic, but I raised my hand and, without waiting for permission, I looked directly at the other class member and said, “You mean you and your sisters hear a conversation completely differently than your stepmother and no amount of talking can convince your stepmother that she’s wrong?” When she nodded her head yes, I promptly burst into tears. I hadn’t imagined the situation! It happened to other people! It was a real ‘thing’.
I didn’t learn the name of the ‘thing’ for another six months, until Deena was again evaluated by a neuropsychologist. The ‘thing’ is known as an Intrusion Error and occurs when the brain inserts an inaccurate memory into an actual event. This makes it difficult to know which elements of a memory are real and which are created and woven into recall of the event.
The test to determine an Intrusion Error Rate is conducted by reading a story that includes a set of specific data elements, such as a name, date, place, etc. After hearing the story, the test subject is then asked to recall the data elements.
When Deena was tested, the story contained 25 data elements. She was able to accurately remember 3 of the 25, but she added 12 data elements that were not originally included in the story. And, when pressed, she was convinced that all 15 data elements that she described were accurate.
Needless to say, the test results showed an unusually high Intrusion Error Rate. One explanation of her ability to say 12 data elements not included in the story was the fact that Deena as still very verbal at that point. Her command of language was so intact, that if you didn’t know better, you would hardly know she had been diagnosed with Alzheimer’s.
But what her verbal capacity covered up was the accuracy of the information. So, I learned to take what Deena said with a grain of salt. This was made more complicated by the fact that sometimes, she did have the information straight and could relate a completely accurate description of the event or conversation.
As I became more educated and experienced in all things Alzheimer’s, I learned to recognize earlier and respond better to situations impacted by Intrusion Errors. I stopped challenging her version of events. I didn’t feel as crazy when our recall was so different.
And I was better able to help other people to sort Deena’s truth from fiction. Most of the time, it didn’t really make any difference if Deena’s retelling of a story wasn’t completely accurate. Who cares if we met friends on Tuesday not Wednesday or that 6 of us had dinner when there were really only 3 of us. I just learned to not sweat the small details.
There were really only 3 or 4 times that I felt a need to follow up with someone after a conversation to correct the record because Deena’s incorrect information left the person with the wrong, and potentially harmful impression. In each case, I had a private conversation with the person, explained about Intrusion Errors and provided a more accurate account of the story. Each time, the person was very understanding and appreciative of my follow up.
Recognizing Intrusion Errors as a symptom of dementia made me better equipped to navigate our interactions with friends and family. Mostly, I felt more grounded in my own reality. And it allowed me to be a more supportive, caring partner and caregiver to Deena.
Thank you Sue for opening my eyes to a different element in Alzheimer’s Disease that I was unaware of. Please continue with your sharing. It’s important
Sue, thank you for your generous gift of “A Caregiver’s Journey.” Your goal of presenting information to ease the journey for those beginning this unwanted adventure and also those involved in the ongoing process is certainly successful. Thank you for personally helping Shirley and me traverse these roads.
I met Sue in an Alzheimer’s Association class and was immediately drawn to her honesty and openness about the path that she and Deena were traveling. My wife was at a slightly different level of disease progression at the time, but the four of us were able to enjoy lunches at restaurants and in their motorhome, and Shirley and Deena would pair off in conversation, which they enjoyed.
Covid hit and it was necessary for everyone to isolate. The four of us were unable to continue our meetings….a loss which Shirley and I grieved. Later we learned that Deena’s untimely death had occurred and we mourned for both of our outstanding “new’ friends.
Prior to starting this blog, Sue had generously shared her knowledge and experience with this disease. On occasion I would call her for information and she was always available and ready to help in any way she could. Her suggestions were invaluable to me as Shirley’s dementia worsened. My awesome wife is now part of a community of memory care patients, as she began to “wander” and I feared for her safety.
Sue, it is my privilege and honor to count you as my mentor and friend. And this blog reflects your desire to continue to share your knowledge with others who must tread this path. It is a fitting memorial to your beloved Deena and to all of us impacted by this disease. Thank you, my friend. Peg