Our feelings and emotions color our lives from birth to death. Each of us ebb and flow through cycles of joy, fear, anger and loss. We know the feeling of love and we can sense alienation. This deeply human emotional experience is unequivocally true for persons affected by Alzheimer’s.
Our emotional life comes from the inner part of our brain called the amygdala. The amygdala is more instinctive than the thinking part of the brain called the cortex. The amygdala is kept in check by the cortex of the brain, in particular the frontal lobe.
This means that a person living with Alzheimer’s will experience emotions, but at times may have less ability to regulate them. As a result, they’re often labeled as having irrational or inappropriate behavior.
Some of you may have experienced the person you know living with dementia seeming upset for no apparent reason. People with dementia often forget the circumstances that caused a strong feeling. But they may retain the feelings associated with the incident for some time.
For example, if your spouse reacted irritable or angry toward you last week because of something you did or didn’t do, that resentment or feeling might stay around for a while even though the reason for the feeling is forgotten.
It’s been said that it’s easier to erase a bad memory than the emotion behind that bad memory. For persons living with dementia, this is certainly the case.
This summer at the Alzheimer’s Association International Conference in Boston, I had a wonderful opportunity to hear Dr. Steven Sabat present and discuss his work aimed at understanding dementia from the inside out.
Dr. Sabat is a member of Georgetown University’s Psychology Department and the author of “The Experience of Alzheimer’s Disease: Life Through a Tangled Veil Dementia (2001), and “Mind, Meaning and the Person” (2005).
He finds that people with Alzheimer’s can form new emotional associations-memories-related to how they’re treated or by an experience. Then, sometime later, they may exhibit the associated emotion, although they can’t consciously recall the incident related to that emotion.
In an excellent book called “Excellence in Dementia Care: Principles and Practice”, edited by Murna Downs and Barbara Bowers (2008), the following scenario offers an example:
“You are a staff member at a day center that serves people including those diagnosed with dementia. The spouse of one of the participants tells you about his wife, “Her Alzheimer’s is getting worse; yesterday after I picked her up at the day center, she became irrationally hostile toward me, wouldn’t speak to me or look at me during the evening.”
What do you say? What do you think? Consider what you might think if you also knew the larger context of the scenario:
When the husband arrived to pick up his wife, she was standing in the hallway conversing with others, including staff members. The husband joined in the conversation but, as his wife was talking, he began to tuck her turtleneck top into her trousers. As he did this in front of others, thinking (incorrectly) that she’d forgotten to do so herself, she was clearly humiliated, her eyes bulging out of their sockets so to speak, but this went unnoticed by the husband. She reacted toward him with anger, but her anger was anything but ‘irrational.’ Indeed, one could quite easily refer to her reaction as ‘righteous indignation’ instead or ‘irrational hostility.’ ”
According to the authors of the book, the woman was displaying righteous indignation; a reactive emotion of anger over perceived mistreatment.
This story reflects the importance of knowing the full context in which a person acts. The woman’s emotional reaction to her husband was actually befitting to the situation. Yet someone with dementia could be commonly labeled as irrational or hostile-his or her undesirable behavior attributed merely to the brain damage due to Alzheimer’s.
Emotional behaviors occur for a reason. The wife in the story illustrates the preservation of implicit memory, also called procedural memory. She exhibited behavior appropriate to an emotion associated with an experience she had, even though she can’t consciously remember the experience.
In other words, she was unable to recall or articulate the details of the situation that caused her to be angry. To do so would require explicit memory, also called declarative memory. This is a function of the brain highly impacted by Alzheimer’s.
I’ll continue to advocate for treating people as people and seeing the whole person, not just a diagnosis or label. Those living with dementia know, feel, and experience life much more than we appreciate. They know when they’re being treated with respect and when they’re not.
Once we believe this, it completely changes us-the way we communicate, the way we interact, and the way we see ourselves in this interconnected web of life.