Last week (June 14, 2017) I received an email from a close friend with a link to an article generated by the North Carolina station of the National Public Radio a month ago. Along with noting that the research process was not what it once was — specifically that I had received a description of a study carried out in India from a psychologist in Israel with a summary of a radio broadcast generated about five miles from my home.
The changes in how we think, process and access information, and communicate change dramatically annually (as well as monthly, weekly, daily even). But is everyone changing how they fit to match our modern world and its information use possibilities?
People of many different income, education, social, and other strata within Indian society took EEGs to study their alpha brain patterns. There were many differences between the way that their brains seemed to work as measured by EEG indicators that could potentially be explained by differences in exposure to different levels and kinds of technologies.
A summary of the work appears here and was written by the University of California, Berkeley, philosopher Alva Noe. Noe discusses how brain wave patterns may have changed as individuals are exposed to the dramatic new information access and processing annually. The original scientific research by DhanyaParameshwaran and Tara C.Thiagarajan appears here. Noe notes that one of the “problems” in our current conceptions of neurocognitive science is that virtually all of the experimental results have been derived from “WEIRD” brains, that is individuals educated in current technologies within western, industrialized, rich democracies. The Indian results suggest that there are different patterns of “NORMAL” brain waves among individual from other backgrounds.
There are many kinds of dementia, but in many types, one huge change is that you lose partially or fully the ability control your facial expression, body posture, and other physical movements that indicate to another person how you feel, how attentive you are, sudden joy, fear, and especially empathy.
Since my diagnosis of FTD (and several years before that), I have heard statements like these from strangers, friends, and family members. Many people think I am angry, disinterested, or not listening to them.
“You never smile.”
“We’re waiting for you not to frown so we can take the selfie.”
“You don’t care what I think, all you do is look at me with a smirk on your face.”
Well, most of the time I am happy and/or neutral although I am sometimes depressed to varying degrees. I am usually interested in what most people are saying. Sometimes I have to break into conversations multiple times to say that I am confused. That confusion is, for me, more likely to indicate that I cannot decode your words because I am losing language skills, not because I was not paying attention to you. I slouch a lot, I often walk looking directly down because I easily trip over over cracks in the pavement and that sometimes leads to falls (I am currently typing using my left thumb on the spacebar because I broke my right thumb in a fall a month ago).
You cannot judge how I am feeling physically or mentally by looking at me unless you are part of my core family and see me very often and sometimes not even then.
Much of how we feel about people is based on their nonverbal gestures and facial expressions. Somebody like me who can barely smile gives people the impression they don’t like what is being said or are annoyed or distracted.
Most people infer negative things from my posture and face and staring that are simply not true.
This is probably a huge factor in how miscommunications often occur among persons with dementia and those they interact with. Even people who interact with me regularly and know my medical problems often misinterpret me.
The following mind model shows some issues in communicating with persons with dementia and possibly misinterpreting what they are thinking and feeling because they look at you with unintended disinterest, never smile, and look distracted. People have often misinterpreted my attempt to smile as smirking.
And if you are a person with dementia, look at yourself in the mirror or in recent photographs and see if you can make some improvements in facial expressions and posture. And if not, when you talking to people, especially friends and family, remind them that you not in complete control of your facial expressions and that sometimes when you think you are smiling or even grinning, the other person just sees a blank face. You can also make a joke out of the situation.
A phrase you have heard thousands of times (especially if you have lived in California as I did for 30 years). If you have dementia you may groan or the statement may make you angry or you might make a pointed comment back.
Chill, Dudes and Dudettes.
OK, I get it (well actually have gotten it for a number of years since diagnosis). There may not be a 100% good day for you anymore if you have dementia. But how about a perfect (or even good) 20 minutes having coffee with a friend or an hour solving a puzzle with a grandchild or 100 minutes watching Guardians of the Galaxy 2 complete with a refillable tub of popcorn. Yup, these periods of a good day may be followed by a period of frustration or not being able to remember something or difficulty doing a task of daily living.
Use the Force, Luke.
Good moments can be great moments if you let them be. They may last only for few minutes or an afternoon, but given that your brain is “sick” they are a huge gift and blessing. Focus on what is happening to you now, try to not let the bad upset you unduly, and try to enjoy every moment for every second possible.
You may master the Force. You may feel better. Is there a better use of your time?
Focus on what is, not what was.
Click the image of the mind model (mind map) to expand it.
Not the past, not what might happen in the future. Fuzzy, intuitive, today’s emotions. Nonlinear, visual, big picture. Attention flows toward good, bright, happy visualizations.
Opening your mind to nonlinear thinking may provide a cognitive reserve that helps you as cognitive functions start to decline perhaps precipitously into dementia. Neuroplasticity is a mechanism that the brain will use to reassign functional processing from one area to the brain as it is damaged by trauma or disease.
One very good way to encourage the development of cognitive reserve and neuroplasticity is to practice nonlinear thinking methods that can help promote mindful solutions. Should the brain become damaged, it may be able to use nonlinear, symbolic visual thinking to cope, at least for a while. And while you practice you may also experience strength in your resolve and understanding.
Do note that the above comments are speculative. There is NO formal research on mind mapping or other comments about this in the literature (other than my own). Also, this is based only on my own experience and generalizations from my earlier research on daydreaming and imagery. So do not go about thinking that this proven. Rather it is speculative.
While I theorize that mind mapping is related to mindfulness in SOME applications, even if it turns out that it is not — from the results of formal empirical studies — there are other demonstrated benefits from mind mapping, so the actual use of mind mapping should still be encouraged.
Apathy is often identified as a key symptom used for diagnostic and other purposes with dementia. Apathy seems to be most often discussed for those types of dementia-causing conditions often associated with young onset.
I believe it is possible to differentiate four types of states that are identified as “apathy.” This differentiation is quite important both for the administration of drugs and behavioral exercises to fight apathy and for planning social interactions and outings for the person with dementia if you are a #caregiver or a #family member.
The following mind map shows and explains four types of apathy that I would differentiate. Click on the diagram to expand it.
Type 1 is what I would call “observer identified apathy.” Caregivers, friends, doctors, and others see an individual who does not smile or seem to react to a positive environment and assume that the person is not experiencing emotion and would like to repeat the experiences often or see the same people again. These observations may have a quite different meanings for different individuals and in fact not represent apathy. For instance, I have little control of my non-verbal expressions (face muscle control and feedback is going, going, gone) and even though I feel happy and engaged you will rarely see a smile and when I try to “force one” for the iPhones, I usually end up making a rather bizarre expression. At social gatherings I often stand by myself just watching. I am neither apathetic nor a “stalker,” rather I often disengage in large groups because I can not selectively attend to individuals or the noise is too much for me to understand what is being said. I am trying to control incoming stimuli not to ignore them. On the fringes or in a quieter space with a small group of individuals I can appear quite engaged.
Try not to over-generalize when looking at a person with dementia and assuming that they are experiencing apathy. Something quite the opposite may be happening. And I may not be ignoring you because I feel apathy or do not like you. You may simply be standing in a noisy, chaotic part of the room.
Type 2 is what I would call “true” or “experienced apathy.” The person with dementia experiences the classic symptoms.
Type 3 apathy is mislabelled depression. Many of the symptoms of depression are also indicators of apathy but the underlying causes of the behaviors may be quite different for apathy and depression. It is important to determine if the person with dementia is actually experiencing depression rather than apathy (or both) as there are medicines available that seem to be able to help control symptoms of depression.
Type 4 apathy is what I would call “deliberate apathy.” When you see me ignoring situations you find enjoyable or engaging or demanding an emotional responsible, it may be assumed that I am experiencing apathy. I might tell you that you are right, I am, but it is because I chose to for this situation. At some point as dementia progresses one may need to make decisions about which activities and people and situations are the most important and should receive as much of the rapidly dwindling supply of mental energy as possible and which should be ignored so that energy can be conserved. These are deliberate decisions that people with dementia may need to make and then adopt as part of their lifestyle. My social circle is smaller because I have had to make choices about where to direct my energy and my “ignoring” someone is not a statement of disliking or lack of concern but rather that I think my family needs my time and energy more than they do. Things I used to think were fun are ones that I may ignore or avoid now not because I fail to think that they are fun but because I have decided that other things are more fun or enjoyable for other reasons and I should invest my limited time and energy into those.
Note that several or all of these types of apathy experience may be going on in a person with dementia at the same time. It is much more complicated than it looks.
Aaahh … “hard science double-blind” research designs.
How do you apply such a design to determine if visual thinking-art therapy-visual cognitive remapping strategies help those who live with cognitive impairment? Do you put a paper bag over the head of the patient and over the head of the healthcare provider-art therapist-social worker? Or blind them.
I don’t think so. Even scientists who bow to the Science God (often noting the relationship to Thor) are not that dum or stoopid. Scientists willing to accept “softer” data and designs like clinical observations, case studies, interviews, and knowledgeable peer judgments are willing to accept the relationship found for some people showing mind mapping is an effective (and cost-effective) way of making some situations less stressful and more productive and life quality enhancing for those living with cognitive impairment.
However, try searching the scientific literature with Google or PubMed for studies of mind mapping and cognitive impairment-dementia. Not a lot of “hard science” results to be found. I see this not as a failure of the efficacy of the method of mind mapping but rather the fact that the brick walls of hard science are not broken down by the sound of trumpets or the roar of a lion. There is a missing link and probably many studies that indirectly demonstrate that mind mapping works well with cognitively impaired patients but are not labeled as such.
Last week I read what I judge to be a highly credible and careful study by two neurologists and an art therapist that was published in April 2014. I think they found the missing link and data supporting it, although they did not call the intervention technique mind mapping for those with cognitive impairment. Instead they called the intervention-life skill to be ART THERAPY for those with Alzheimer’s disease and other dementias.
There is a LOT of literature showing that Art Therapy increases social interactions, understanding, motivation, enjoyment of life, associations, and perhaps memory among those living with dementia, and even for those in the latter stages of the disease.
What is Art Therapy? Applying color, form, creative ideas, social interactions (with a teacher and other participants) and positive psychological states to try to understand the world better and communicate the perceptions of the artist.
What is ORGANIC (Buzan-style) mind mapping? Applying color, forms, creative ideas, interactions, and positive psychological states PLUS radiant, hierarchical, and nonlinear organization to try to understand the world better and communicate the perceptions of the artist.
Is this conceptualization of mind mapping with and by the cognitively impaired as an enhanced formulation of ART THERAPY (conducted by a professional, family or friends, caregivers, the patient her- or himself) to help individuals use visual thinking strategies to navigate their world a break through one? I think it is the scientific missing link and we can bootstrap from the findings that Art Therapy is a good intervention for dementia to ORGANIC mind mapping may be a good intervention for dementia and perhaps will achieve a greater effect than less focused “art.”
Here is a link to the paper. Click on it to retrieve the article.
As a technical note, the authors’ use of meta-analysis to combine the results from a number of independent studies selected for their methodological soundness is an accepted one which has become popular in the past three decades.
I want to see much more research on this topic. BUT, I think that we are currently moving in the correct direction in a “leap frog” way with great speed.
Keep both eyes open and click on the image below to expand it.
When you are done, part 2 can be accessed in a new window by clicking here.
Every year around this time, I go out and buy a new external hard drive, copy all of my computer files onto it, set the file to “read only,” and then archive it. The drive contains my memos, years of email, 14 drafts of manuscripts from 15 years ago, data from projects long completed, jokes I receive by email, contact information for hundreds of business acquaintances I will never hear from again in my retirement. It also contains copies of all my photos (many duplicates and out-takes) in a very disorganized state.
I invest in religiously saving this information even though a high percentage is junk that should be eliminated from the digital attic. I think there is some value in preserving this stuff, if only to reduce my anxiety that something got lost.
My personal insights, feelings, events big and small, interactions with people, history, memories of Mom and Dad, and all of the stuff that makes life worthwhile and important. HHhhmmm. Doesn’t need to be organized because I will remember all of that really important stuff.
IDIOT. If there is anything that should be backed up it is ME, not a bunch of outdated and stoopid memos.
Some ideas about archiving ME. Think about archiving YOU. I suspect this will be a very valuable exercise for both of us even if the “Big D” (dementia) is never an issue. Why not fight back against the possible Big D?
THAT (clip from information sheet attached to prescription refill)
OR THIS (pictures could be added, fonts could be changed, colors could be changed, style could be changed)? [I am NOT advocating any specific design without pilot testing although I tend to like some of the designs near the top and near the bottom better, especially since I believe they will communicate more effectively to all ages but note that this has not been proven. And, note that a professional designer could undoubtedly do a better job on the artistic elements and a neurocognitive specialist would be quite valuable as a reviewer to maximize impact.]
Click on any image to expand through several levels of zooming.
Here are links to some earlier posts about events, people, reactions, and other information you might wish to document as you age so that you (or a caregiver or younger family member) will have the information later. Each of these posts illustrates combining text and images. These examples are ones that can be done by you before you have any cognitive problems as a self history as well as with a caregiver after problems occur. Any whether you ever need to use to help you if there is a cognitive decline, these are great ways of passing down information from generation. I wish I knew much of this information about my parents and other family members. Click on links to see examples.