The #1 thing that I have learned over almost a decade of living with dementia is that thinking in pictures (images, diagrams, doodles, etc.) is much more effective than using words alone. Hedge your bet. Use pictures that associate with words rather than just words. After all, in many types of dementia, you lose your words at the end while the pictures may escape loss.
Try it. You will probably like it. Creating visualizations of important events, ideas, feelings, and other information can be FUN.
I’ve been using visual thinking methods for the past 10 years. They work (for me).
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.
That sucks.
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.
The mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.
Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.
These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.
Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.
I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.
Here is what appears in the blog posts and elsewhere on Hubaisms.com.
Click on the image to expand it.
Click here to see Part 2 of My Vision in a separate window.
One way that healthcare communication can be made more effective is to supplement or replace traditional pages of small-type textual information with graphic displays such as mind models (AKA mind maps), sketches, graphs, and infographics.
This post focuses on mind models (mind maps). The same general arguments would apply to sketches, graphics, infographics, and other visual information methods designed to promote a more effective patient-oriented healthcare system with more complete, accurate, and easy-to-understand information for all.
If you are not familiar with mind models (mind maps), you should look at the mind map at the bottom of the page first (Footnote).
I have been a HUGE fan of the Olympics since I was a very little kid. In 1984 I got to go to the Olympic events in Los Angeles every day for two weeks, on many days with my father. That was the year that the Soviet Union boycotted the games because the USA had boycotted the Moscow Olympics in 1980. Heck, I thought it was great — the USA and East Germany (who came) won all of the gold medals! Months earlier when local pundits in Los Angeles said Los Angelenos were too apathetic to purchase expensive Olympic tickets especially with the Soviets and most of the Eastern Bloc boycotting as it would not be a real sporting event, I had bought as many tickets for the “finals” as I could get my hands on. Later I sold the extra tickets as Los Angeles fell in love with the games. I made so much money that the expensive tickets I had bought for the entire family of 7 that we used ended up were effectively free since the profits covered the cost of the tickets we used. Street enterprise at its best. My tickets became worth more because the Soviets didn’t come as all Americans became Olympic fans the year we won all the golds.
Winning the race to live well with dementia is like running the 10K race at the Olympics. Everybody has to pace themselves at the beginning so that they can learn about their opponents. In the final stages of the race they speed up and sprint their fasted the last 200 meters.
A mind model of the dementia race strategy is shown below. Click the image to expand it.
I think I am winning my race to live life to its fullest while having dementia. I’m getting ready to claim that gold medal. You can win your race too. Think about what you are doing and strategize like a 10K runner. Learn all you can in the beginning and then speed up later as your new knowledge kicks in.
I expect to be adding a lot of posts about (or using) sketchnotes in the next few months to Hubaisms.com. Here is how to find the existing ones and the ones I will add. The information as a sketchnote. Click on the images to expand them.
Since the beginning of this blog in 2012, I have consistently — with each new version — concluded (from dozens of comparisons with other programs) that iMindMap is the single best program for developing mind maps. Period.
With version 8.0, iMindMap is no longer the world’s best mind mapping program. Rather, it is the world’s best mind mapping program PLUS additional features that make it the world’s best visual thinking environment (or VITHEN using my coined term). Period.
What makes iMindMap 8.0 so valuable as an overall mind mapping and visual thinking tool is that it encourages you to use iterative, hierarchical, nonlinear, big-picture, creative ways of generating ideas, communicating those ideas, and integrating the ideas with the data of images and statistics. There is no tool I know of that is better for these overall tasks and the building of creative models.
I use iMindMap between 3 and 10 hours per day on the Mac, iPad, and iPhone 6 Plus.
Version 8 exceeds Version 7 in that the program has been significantly speeded up both for computer processing and in general usability of all of its advanced formatting features. The increased speed with which advanced formatting can be done encourages more precise and creative visual thinking.
Did I mention it has a very good (becoming excellent) 3 dimensional display mode and provides a much better presentation tool than the PowerPoint standard? The new Brainstorming Mode (file cards on a corkboard metaphor) allows those who like to see words rather than images to brainstorm in the mode most natural to them. I’ll never use the mode but I project many will embrace it.
The iMindMap program has been the best tool I have had to allow me deal with a neurocognitive neurodegenerative disorder and continue to be productive over the past five years. The program permits me to think at a very high level which I cannot do nearly as well with other techniques or other mind mapping programs.
All seven maps shown here are identical except for their format.
[I intentionally did not use any clipart because I did not want distract from the basic creative thinking and model development-presentation functions of iMindMap that are the real core of the program. With any of the variations of this map, if you spend 10 minutes adding selected included clipart or icons, the map will be even more visual.]
The remainder of my review is — appropriately — presented as a mind map.
Click images to expand.
Three styles provided with the iMindMap program.
4 Custom Styles I Use in My Own Work and 4 Variations on the Same 3D Mind Map
I think that a lot needs to be done to make the web sites of various dementia advocacy groups and non-profit organizations more friendly to those that have dementia. A lot more.
The sites are too busy, too dense, and the big picture is not always clear in the structure of the sites and the flow from page-to-page.
It is very disempowering to have web sites about dementia that are not maximally useful to people living with neurodegeneration and dementia.
Living independently or semi-independently with cognitive impairment and early stage dementia is an admirable goal. Remember, however, that there are many cautions and possible problems that you, your caretaker, your family, and your doctors need to be aware of and monitor.
Plan to discuss these (and other) issues with your doctors and others on a regular basis. It is an important part of trying to stay as independent as possible.
This mind map is an enhanced version of a mind map I first published about a year ago. As is well recognized in the literature and discussed previously on this web site, individuals experience the progression of dementia in a number of ways depending upon the specific underlying disease or condition that causes the dementia symptoms to appear, existing psychological resilience factors independent of the neurological issues, and one’s psychological and physical resources.
You CANNOT diagnose yourself as having cognitive decline, cognitive impairment, or dementia from the information in the mind map. People without neurological OR psychological illness, problems, and issues may experience these feelings.
The map does provide an overview of some of the feelings and views that individuals whose cognitive health is declining may feel.
Etiquette in the Era of High Levels of Adult Cognitive Impairment and Ubiquitous Mobile Tablets
A little role playing exercise.
What is going on? The person (with dementia) sitting opposite you at the restaurant just pulled out an iPad and connected to the Internet. Is it rude or something else? Perhaps that person is using the iPad to look up information on the Internet (or iPad)? As technology progresses and behavior interventions are introduced for cognitive impairment, that is not an unlikely possibility.
Now, put yourself in the shoes of the person with cognitive impairment. Why might you want to consult your tablet or smartphone? How would you feel? How would your dinner companion see you. Rude? Shouldn’t. You are very very smart.
Oh, and real life, I am the guy with the dementia and iPad. Even when you do not need it, it is quite reassuring that it is there. I don’t leave home without it.
Sometimes the following trick helps me both code notes (or task lists) and grabs my attention when the ignored task list is floating around on my desk or becomes part of the wad of notes, receipts, and other small pieces of paper that accumulate in my pockets. I review the wad of paper regularly (hopefully finding it before I put the pants or shirt in the laundry and being transformed to lint in the dryer). This little trick is used by people who make sketchnotes for a living (see the wonderful books by Mike Rohde on sketchnoting). Sketchnoters — because of their business and professional audience — tend to use a more subtle and artistic version of what I do (after all their audience is wearing suits while my audience is me wearing shorts and an old T-shirt). Same principle though.
[Star Trek may have incorporated the following idea into some of its episodes.]
The thick-thin pens are called Fude de Mannen by their manufacturer Sailor and fairly inexpensive. A much more elegant and expensive option that does the same thing is any Sailor fountain pen with a Zoom nib. You can also do the same shift between thick and thin inexpensively with a Noodler’s flex pen or many calligraphy pens (the Japanese ones are best and brush pens work even better) or much more elegantly and expensively with either a Pilot Falcon pen or any Pilot pen equipped with an FA nib. I have no commercial relationship to any of these companies. The odds of finding any of these pens in a brick-and-mortar store in the USA are fairly low but they are available widely on the Internet with many coming directly from Japan (yup, they ship anywhere).
I use different writing implements to vary things, color code, and even slow myself down (like the decorative fonts do) in order to increase the time for memory encoding, to build in uniqueness that grabs attention, and to amuse myself (I am easy to amuse).
Many of these “tricks” are the same as those as used in mind mapping without the most important feature of structuring, restructuring, and formally associating many ideas.
The next logical step after these kind of notes is mind mapping which I strongly endorse. On the other hand, some people just want to takes notes and may not want to take the time to carefully think through them or organize their thoughts, and for those folks at least remember this.
&&& the purpoSe of noteS is to REmemBER in parT because the noteS are MEMOR(Y)able and you pay more attention to them ***
While I cannot prove this, it is my guess that these techniques will also be useful for those with memory and attention problems like normal aging, cognitive impairment, dementia, Alzheimer’s, and ADHD. But all of these conjectures require empirical research to substantiate and are just WAGs (Wild Ass Guesses) on my part at this time.
I frequently tweet about neurological diseases, sending out links to US government and major foundation web sites. These tweets are among the most retweeted and favorited of those I distribute.
As you may have inferred as you look at the fact sheets distributed, there are commonalities among many of these diseases above and beyond the fact that these are all diseases of the nervous system.
Very few of these diseases have treatments. Most of these diseases are rare and often not detected by primary care physicians or even related specialists like psychiatrists. Medications are frequently used off-label for controlling symptoms like depression, anger, tremor, and many others but these treatments are rarely effective for a long time, if at all, for most patients. Because these are rare diseases and neurological research itself is quite expensive, a small portion of the US medical research budget is spent looking for cures or effective symptom control.
The following mind map shows some of the commonalities among the neurological diseases. Click on the image to expand it.
The next mind map is identical to that above. The formatting has been changed so that you (and I) can judge if an alternate format is more useful for certain audiences.
It you go back a few posts you will see that I have been pretty sure recently that creative visualization (through drawing, sketching, doodling, painting, finger painting, etc.) has a strong link to creative organic (Buzan-style) mind mapping.
I don’t consider myself “artistic” in the traditional sense although I have been drawing a bunch of inky squiggle marks, cartoons, and emphases in my notes for as long as I can remember (back to elementary school 55 years ago). When I was in college I sometimes felt overwhelmed by the “pictures” I had doodled on my notes in my math and science courses and recopied the notes so that others would not see the open pages of my notebook with the doodled smiling faces, arrows, “middle fingers,” large letter expletives,” dollar signs, Greek letter shortcuts (in my profession I have an affinity for the Greek letter psi 𝚿 used as psychology, and the Greek letter sigma 𝝨 used in statistics to signify the sum of numbers and in my notes next to summations I make), traffic lights, stop signs, and lots of different kinds of squiggles and arrows. I also draw lots of cartoon faces that look nothing like anyone I know.
On a typical page of my notes two-thirds of the page is usually covered with cartoony figures and symbols and I begrudging print in some of an outline of what is being said along with color annotations. My typical notes use at least three colors.
Yeah, but my artistic ability still stinks. Can’t even draw my dog so that she will look like my dog but I do know that any cartoon figures in my notes that look anything at all like a black dog are my beloved Newfie.
Deborah Putnoi’s book The Drawing Mind shares much with the organic mind mapping theory of Tony Buzan. There is an emphasis on coding information in multiple channels (as in her exercises in drawing scents and sounds), using visual thinking methods, employing emotionally meaningful symbols, and not worrying about “photographic” drawing.
Putnoi’s approach is on meaningful, creative, visual coding of information. She emphasizes the process of coding information that may not be visual into visual symbols and grouping those symbols (“marks”) together to create visual meaning. This type of encoding is an important part of visual thinking.
If you like organic mind mapping and want to explore extensions that can go far beyond adding some clipart to a computer generated mind map, this book is extremely useful. I see a great degree of complementarity between Buzan’s radiant thinking theory and Putnoi’s theory of coding information into a visual form. Historically, Buzan’s theory has incorporated “hand drawn” (that is creative, personally meaningful) elements since it’s earliest development.
And, the subtitle on Putnoi’s book — Silence You Inner Critic and Release Your Creative Spirit — gets a “four thumbs up” (actually two thumbs and two big toes, visualize signaling that) rating for its significance to both her work on drawing and Buzan’s theory of mind mapping.
Highly recommended. And bring your pencil as that is needed to read the book.
It is my personal belief that Putnoi-type symbolizations may be very useful those in early stages of Alzheimer’s disease and other types of dementia as a way to code and save visual information and potentially express this information to others. But that is my hypothesis, and whether it is true or not, Ms Putnoi’s book is an exceptional one that teaches some critical skills in visual thinking through a series of “exercises” or studies of process..
Here is a technique I would try with someone with cognitive impairment. It might also work well with a child, an elder, or anyone else in-between who needs a little help with organization and planning. A caregiver can prepare a mind map or you can prepare one for yourself.
I find the size of standard business envelopes (#10 in the USA) to be just about perfect as a daily information catcher. You can write your schedule on the front and slide the envelope in a pocket, small bag, or the inner pockets of most men’s jackets either unfolded or folded. And since this is an envelope, throughout the day as you pick up receipts, reminder cards for your next appointment with the dentist, a flyer about a concert and all the other little tidbits of life that get lost in your pocket and end up in the clothes washer you can insert them into the envelope and have a good chance of not losing some important information.
Using a mind map instead of a list on the front of the envelope can engage the user, permit color coding, and makes it easier to remember the content.
Takes a couple of minutes.
Yup boss, I have the receipt from lunch.
Notes:
I printed the mind map on an actual business envelope and then scanned it. The green paper was just a background for the scan.
You can use any style you like for the mind map. I chose a font designed for individuals with dyslexia just to illustrate tailoring the content and style of the map to the individual using it.
This mind map was designed in iMindMap. If you wish you can add clipart or photos to the branches; typically I would not just because of the small size of the envelope. Bright colors can substitute for images to engage attention and color code sections.
One can change the map simply by crossing out information that has changed and making notes on the map with a pen.
I think that this can be a very good technique for a paid or family caregiver of someone with cognitive impairment. Prepare the envelope in the morning or preceding evening and go over it with the patient when it will be used (mornings are preferable). I did not put the person’s name on the envelope since the front or inside may contain private information (names of doctors and similar information like medication reminders). I would not put medications in the envelope as they fall out too easily. It may be useful, however, to carry a small amount of paper money in the envelope. Also a standard card with the the caregiver’s first name and telephone-email may prove helpful should there be a health or other problem.
Governments and other public entities are increasing their use of web sites as the primary publication outlet for medical, human services, and research information.
The transition to electronic publication saves money as well as other resources and at the same time is much more environmentally-friendly. At least a few forests in the world owe their lives to the decision of some of the largest paper users in the world to move to electronic publishing.
Electronic publishing offers a special advantage not generally available in traditional publishing on paper. On the Internet it costs no more to include colors, simple and complex images, and images that expand to show greater detail. And it is much less expensive for publications to present, in addition to their traditional text, graphics maximized facilitate creative thinking, memory retention, “big picture thinking,” and explanations that may be easier for individuals using other languages and from other cultures to understand.
Not everyone in the world does their primary thinking using words. Many — including me — find visual information more valuable, easier to assimilate, and more supportive of creative insights.
How often do you see a #MindMap, #ConceptMap, #FlowDiagram, or other visual representation on a government web site? While there are plenty of pie diagrams and line charts, such representations of data are quite limited and do NOT incorporate informed interpretation of information. Also, while there are plenty of pictures on government web sites, these images do NOT incorporate informed interpretation of information and they may give a quite biased view of data.
I do not recall ever seeing a #MindMap, #ConceptMap, or #FlowDiagram on the (otherwise extremely useful and high quality) web sites of the US Social Security Agency, the abstracts in the PubMed medical and scientific information databases, and the US government’s explanations of research and social programs, diseases and social conditions, and social service eligibility forms.
World-wide thinking is increasingly visual. Official information should be presented using both the traditional text-based methods currently employed AND newer, very effective methods of visual thinking. The brain is not limited to a single form of thinking and in fact research shows clearly that some of us (including me) handle visual data far more effectively and perform some of our best work using visual thinking techniques. Research also suggests that as the brain changes through disease processes such as Alzheimer’s disease and other more rare neurodegenerative conditions, as verbal centers suffer damage, visual centers may assume increasing importance.
While I strongly prefer #MindMaps as the method of presenting visual information, I could accept #ConceptMaps, #FlowDiagrams, and other visual thinking representations as at least a first start.
Of the mind mapping methods, I strongly believe that the Buzan-style organic mind maps including color-coding, size-coding, radiant information structures, and methods designed to optimize memory retention, memory retrieval, creativity, and cross-cultural communication are the most effective. A recent addition to mind mapping has been Huba’s method of mind modeling that adds all of the components shown in the figure below.
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.
Google Glass can almost immediately be used as a technology to help those living with dementia and cognitive impairment recognize faces and associate names and other information, know their location, and make associations between environments and their own life experiences. The software needed to be used along with Google Glass is, in most cases, existing and needs to simply be modified for individuals.
Click image to expand.
Blog posts and other information about the use of Google Glass with those living with Alzheimer’s as well as other types of dementia can be accessed by clicking here. A new window will open with current suggestions from a Google search.
This YouTube video shows the national award winning science project of four sixth grade girls. The future of Alzheimer’s care is in good hands.
Big Data (in service to the NSA) wants to be able to document what you do and when and where and with whom. All of the current databases that companies and public agencies maintain can now be tightly linked to get a pretty good profile of any individual.
But, these models of what people will do when you ask them to buy a DVD of Thor 2 or a suit from Brooks Brothers, are actually fairly dumb brute force computer algorithms that break down when certain types of problematic data are fed into them.
Hhhhmmm. Some thoughts below in the mind map. Click the image twice for a full expansion.
This post does not contain medical advice. None of the methods described are known to be therapeutic. What is described are possible note-taking or information-sharing models for patient-client-self management.
For the past few months, I have been focusing on the use of mind maps to assist people with dementia, cognitive impairment, or cognitive decline deal with various issues that arise as they work hard to maintain independence.
You can access those posts simply by using the search box at the bottom of each post with keywords like “dementia” or “cognitive.” Several dozen blog posts will pop up with most very recent.
But the reality is that as dementia or other cognitive problems progress, many patients will require increasing amounts of supervision and care. Mind maps may prove to be useful in assisting a caregiver to help in a more effective, and cost–effective, manner.
Just as those with cognitive decline may be able to remember, plan, express themselves, and document their lives in maps, caregivers may be able to use these techniques themselves to provide better care and client management. Mind maps may potentially help the caregiver recall the preferences of the client, as well as the client’s life history, important events, significant people, and life style
Caregivers may find that visual information recorded in mind maps provides a good way for the caregiver and the client to start discussions.
Caregivers may find that clients can express themselves better with pictures, drawings, doodles than in words.
Caregivers may find that their own notes from each day are more useful if captured in the format of mind maps.
Caregivers may find that mind maps may be used for brainstorming by themselves, with healthcare providers, with family members, and with the client ways to organize daily events, select food and clothing, remember medications, and organize social events.
Caregivers may find it useful to record their own feelings in mind maps as a way of dealing with the emotional and physical stress of caregiving.
The daily calendar — including doctor visits and other appointments and visitors — may be easier to prepare as a mind map and much more useful to the client.
There are dozens of other ways mind maps might be useful in caregiving. I am going to write many posts on this topic in the next months. For now, here are a few examples with many more to come.
Click on each of the images to expand it.
Preparing a Mind Map (with the help of the client or family members) of the Client’s Preferences.
***
Preparing a Mind Map (with the help of the client or family members) of the Client’s Religious Beliefs.
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Preparing a Mind Map (with the help of the client or family members) of Things the Client Especially Enjoys.
***
Preparing Mind Maps from the Warning Brochure that Comes with Each Prescription Refill.
OR
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Preparing a Mind Map of Each Day for Your Use and That of the Client.
***
Technical notes. The sample mind maps here were all prepared in the computer program iMindMap, which I strongly prefer both for the way it facilitates mapping and the way it typically produces maps that can be very useful. There are alternate programs that can be used, although perhaps not with the same level of good results possible with iMindMap. Because the maps will be used by caregivers and clients, they will tend to be most effective if colorful, “bold,” graphically interesting, and with large typefaces all of which are easily done in iMindMap. Acceptable alternatives to iMindMap would be iThoughts, Inspiration on the iPad (but not on the PC or Mac), MindNode, and XMIND, although each of the alternatives will be more difficult to use to produce maps for clients with cognitive decline than is iMindMap. There are free mind map programs available or free demo versions. This is a case, however, where paid versions are far more cost-effective than the free versions or most free programs. There is a second type of mind mapping program more suitable for business purposes (the major one is MindJet MindManager and also MindDomo and MindMeister) than those caregiving applications discussed here.
The information in this post derives from very credible web sites. [As a note, much of the information about Alzheimer’s disease and “normal” or typical aging appears to be accurately derived from the public domain information put online by various departments of the US government.]
I believe that the following mind map is better for explaining the information.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
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The Alzheimer’s Association has posted this professionally valid information on its web site designed in a way as to be compelling through its high density of high quality warnings.
The “problem” with this brochure is that it is “too dense” for me (and probably anyone else without a professional background in medicine) to be able to understand and remember the information. How about including this graphic as a third page (ideally as the ENTIRE page 2) in the brochure. I would bet that the outcomes from the extra understandability and memory retention for this critical information would prove to far offset any additional printing costs.
[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]
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.
Most neurodegenerative diseases that cause dementia have no cure nor particularly effective way of controlling the symptoms of the disease.
Most individuals use notes and checklists and reminders and calendars — fancy or simple — to help deal with loss of memory or the ability to make decisions or prioritize tasks and remember people.
There are better ways to take notes and manage calendars and enhance-stimulate memory and other cognitive functions. I think mind mapping (Buzan-style) is the best way to perform these tasks.
Although better note-taking will not cure brain degeneration, it may increase quality of life and the ability to remain independent or mildly dependent for a longer time. Even a few better days in a month is a huge improvement for individuals with neurodegenerative diseases and something to be treasured.
Many different types of neurological disease cause somewhat varying forms of dementia. Dementia is not exclusive to Alzheimer’s disease. The constellations of symptoms and their severity in the dementias associated with different conditions are not identical.
Click the figure twice to expand fully. This figure is a slight reformatting (adding color coding and brain images) of one appearing in earlier posts.
Here are two more variations of the same map. [Content identical. Formatting slightly changed.]
As I age (and have time during my retirement), I have been reading a lot about the neurodegenerative diseases (Alzheimer’s, Parkinson’s Lewy Body Dementia, FTLD) and upcoming crises in the healthcare system as people live longer and are more likely to experience one of these conditions. At the same time, I have reading about the absolutely brilliant work being done in neuroscience and medicine (neurology) on the functions of the brain. I am totally in awe at the quality of the science going into brain research.
As a consequence, I am starting this page of citations to publish bibliographies of basic science articles that provide possible mechanisms for studying the efficacy of mind mapping and other visual information techniques in neurodegenerative conditions (Alzheimer’s, Parkinson’s, Lewy Body Dementia, Frontotemporal Dementia or FTD or FTLD, CBD, PSP, and other conditions).
Searches of medical databases tend to produce a highly technical bibliography. NONE of the articles proves a neurogenesis mechanism is stimulated by mind mapping or even that one exists. NONE of these articles proves that mind mapping is effective. What the articles do is to present a selected bibliography of research into brain plasticity and neurodegenerative conditions. Science is all about reviewing prior work (original research, summaries, meta-analyses, theory) and seeing where we go next. Translational research is about taking the results of basic research and developing better treatments, diagnosis methods, and care management.
My own belief is that after degeneration the brain is probably still somewhat plastic and can recode information into alternate forms. Visual learning methods may be helpful to stimulate or guide recoding and shifting functions to less affected areas of the brain. Visual learning methods CANNOT treat a brain disorder, but they may be valuable assistive aids to slow the degeneration of the individual’s quality of life and independence even though they will never be a treatment to slow actual brain deterioration. I believe that it is possible to stimulate relatively less affected areas of the brain to take over some of the functions of those areas that are shrinking. Visual learning and data re-organization (with mind maps being a primary method) probably help to slow the slide of individual patients into stages where they are highly dependent on a caregiver and cannot participate in many formerly enjoyable interactions and activities. NONE of the studies in the articles in my literature searches proves that I am right.
We have learned a huge amount in the past THREE years about how the brain works. This is just the beginning. Until such time as there are truly effective medical treatments (developed from research) that can prevent or “fix” neurodegeneration, well-established, visual cognitive tools may provide help in slowing the fall in the individual’s quality of life. And in future decades we will have a much better understanding of the synergistic roles of formal medical treatment for neurodegeneration and visual methods of learning, memory retrieval, and decision making.
This is going to be a cumulative set of database searches. I will periodically add searches of public access (free) medical databases. At those times I will republish the page with the date of revision and version number.
The results of the searches are not medical treatment advice. The results are not suggestions for future research. The results are not exhaustive. No guarantee of the quality of individual research articles is made or implied by inclusion in these searches.
Help support the continuing evolution of our understanding of the brain, medical treatments, and useful visual learning and cognitive methods for slowing the deterioration of quality of life by learning about the scientific research going on. (And yes, I support stem cell research.)
