Updated: Mar 29
This week I validated a lovely man who apologized for having difficulties talking to me. He explained his problem in the most wonderful way: “I have hiccups in my memory.” I loved his description so much. It was so exact in what he and others like him feel. His memory has some jumps, like an old vinyl record with a few scratches that skips some beats. We can still love and enjoy that record even though it isn’t perfect anymore and we can love and enjoy a person who may be disoriented and/or suffer from memory loss.
As I described in my last blog, labels can be very detrimental. We need to find new terms to replace Alzheimer’s and Dementia which cause people with memory loss to be stigmatized and treated differently. We need to find terms that are more respectful as well as allow the rest of society to be more accepting of people who have been diagnosed with dementia. “Hiccups in my memory” is a good start.
Dementia -A Word to Be Forgotten
In so many areas we have changed our terminology to be more respectful. Thankfully terms like retarded and crippled are no longer acceptable and are rarely used anymore. We need to find replacements for Dementia and Alzheimer’s as well. I was so pleased to find this Neurological Review in JAMA (The Journal of the American Medical Association):
Dementia – A Word to Be Forgotten Don I. Trachtenberg, DDS; John Q. Trojanowski, MD, PhD “A rationale is presented for the elimination of the word dementia as a diagnostic term. It is viewed as a generalization that is pejorative and harmful based on historical and current patient, caregiver, and physician perspectives.”
https://jamanetwork.com/journals/jamaneurology/fullarticle/795549 Sadly, this was published in 2008 and the medically community is still using these same terms that are derogatory.
Mindfulness, Zen and Dementia
Mindfulness is the practice of bringing one’s mind to the present and it has become more popular lately. Many people are turning to meditation to try to cultivate mindfulness so they can live in the moment – rather than be stuck with recurring thoughts about past events or worries about the future.
It can take years of practice to be mindful and many of us look with admiration at those who can really live and enjoy the present moment.
Now let’s think about people who may have more advanced memory loss. We often say they are living in the moment because they soon may forget what they just experienced. What if we looked up to these same people who forget and marvel at how mindful they are; how they are able to live just in the present. How would that change our perspective of someone who has been diagnosed with dementia if we heard them described as mindful? Can you feel the power of using the term mindful and how it would change the way all of us relate to someone with memory loss?
Many years ago I read an article that had a great affect on how I personally look at people who live with dementia. In the article they looked at people with dementia as enlightened. They explained, just as a Zen monk will work his Zen garden, slowly repeating the act of moving the stones and sand in order to enjoy this simple act at this moment, people living with dementia often repeat the same movements or even ask the same questions. One woman may constantly fold napkins, another may constantly move his fingers back and forth on the armrest of his wheelchair and a third may pound the table at a continuous rhythmic movement. All of them are lost in the repetitiveness of their movements. They have all found pleasure in their very simple repetitive acts like the Zen monks. I did my research and found this wonderful article that was so influential on my work. It was Kenneth Brummel-Smith, chair of the Department of Geriatrics at Florida State University’s College of Medicine who compared people living with dementia as enlightened. “Consider Zen Buddhism, which is all about clearing your mind, detaching from your thoughts, grounding yourself in the moment. Well, that’s Alzheimer’s.” https://www.latimes.com/archives/la-xpm-2004-aug-22-tm-alzheimers34-story.html
So memory loss can be described as hiccups and people living with dementia can be mindful or enlightened. That is a start. I would love to hear about other terminology you may be using so the term dementia will soon be forgotten by all of us.
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