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social, health, political imagery through the lens of George J Huba PhD © 2012-2019

Search results for Alzheimer's

Dr Rita Jablonski-Jaudon has a really nice article on 10 rules to follow in order to provide effective, compassionate, and comprehensive Alzheimer’s caregiving. Dr. Jablonski-Jaudon is an expert on Alzheimer’s care, and I have greatly respected her judgment over the decade I have known of her work.

The article may be accessed here. Clicking the link will open a new window.

I wondered if the information could be presented in a somewhat more compelling way visually as a mind model (AKA mind map) with a very large (some would say excessive) number of images embedded in the diagram.

So I tried this afternoon. I like the result; hopefully Dr Jablonski-Jaudon will also. Spend a few minutes looking at this and the images, and I suspect you may view caregiving in a somewhat different way.

Note that you should read the original short article either before or after looking at the mind map. There are some further explanations of concepts in the original piece.

Click on the image to expand it.

The 10 Commandments of Alzheimer's Caregiving by Dr Rita Jablonski-Jaudon

 

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Recently I have had a number of discussions with Tony Buzan (@Tony_Buzan) about how the relationships between art and creativity and dementia support the conclusion that mind mapping may be useful in helping those with cognitive impairment. I believe that my my conclusions are supported by a sufficiently large scientific literature of credible studies to make the assertion of the probable link and to suggest that additional research should prove to be fruitful.

Here is how I access credible scientific research in the fields of medicine, healthcare, mental health, and related fields. Note that in addition to my searches, the same system works the same way with searches for information about cancer, heart disease, ADHD, autism not being related to vaccination, and organ enhancement of various kinds. Patients, scientists, and those who make medical claims late at night on informercials may want to consult this database. Especially informercial producers who disseminate inappropriate, biased, and wrong health information and claim it is medically-proven.

Click to expand.

Scientific Literature  on Dementia,  Art, Creativity

 

The first version was published a few posts ago and created in iMindMap 6. The original post has a discussion of the highly credible web sites from which the information in the map was developed.

10 Warning Signs of Alzheimer's Disease

This second version was created by reformatting the first using some new tools available in iMindMap 7 and capitalizing on the improvements in speed and ease-of-use of tools that had been available in iMindMap 6, but in a more primitive way. In particular, it is now much easier to work with text meaning that pulling text into positions on the canvas ringing the map may be a good way to store data related to the conclusions embedded within the mind map.

I7 10 Warning Signs of Alzheimer's Disease.imx

I will be reviewing many of the current crop of free and paid iPad apps found under the search titles Dementia or Alzheimer’s. There are at least 30 of these and I downloaded all I could find. I am also looking at Caregiver apps of which there appear to be about 20. i will be trying to make sense of it all over the next month. Many of the apps appear to be small reworkings of materials whose parentage is questionable while others appear to be innovative and to have research support. As I go through these apps, I urge relevant professional associations to sponsor reviews of these apps by their skilled members. So far as I can see, many of the apps could be helpful to selected groups while may produce no benefit or in the worse case work against established practice standards.

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CLICK HERE to open another window showing all of the posts to date (more than 20 are expected) in this series on The Great Visual Thinking Machine.

#TGVTM #TheGreatVisualThinkingMachine #MindMap #CognitiveDecline

#Aging #NormalAging #TypicalAging #Alzheimers

This is post is part of a projected series of at least 20 posts. Searching for any of the keywords given above in the search box for this site will list all of the tweets in this series. The search box is located in the upper left corner of each post. The most accurate search should come from TGVTM or #TGVTM.

In the two prior posts (Prologue, Part 1) I have discussed a model for a general model of cognitive information process for improving thinking It is my belief that the model can be used by adults with typical patterns of aging as well as those with cognitive impairment and dementia. The model is characterized by several major features. These are

  1. a large percentage of the information input and process and outcome information are in visual form;
  2. the model uses a unique blend of methods of processing combinations of primarily visual materials.

I call the model The Great Visual Thinking Machine™. The acronym is TGVTM™. The TGVTM is not a physical machine like a computer or automobile. Rather it a combination of procedures and knowledge as well as computer and commonsense algorithms that allow you to easily process large amounts of visual and verbal information. The key to the TGVTM is a way of using “pictures” to organize information, thoughts, and the results of processes. It can aid in better understanding related information, coding complex information into high-information images, an advanced way of increasing the likelihood that the information can be retrieved. The intent of the TGVTM is to produce generally better overall thinking.

Some examples that you might want to consider to visualize my concept are:

  1. the laboratory of Dr. Emmet Brown in the movies Back to the Future I, II, and II;
  2. the chocolate factory of Willy Wonka in the film Charlie and the Chocolate Factory;
  3. and — of course — the machines built by Cyberdyne Systems for Skynet which then produced the machines in The Terminator and its numerous sequels;
  4. and the last but the best analogy is the programs, environment, and thought processes of the characters living inside The Matrix I, II, and III. Plug Neo, Trinity, and Morpheus into the Matrix and watch their information process become almost entirely visual as they battle Agent Jones and Agent Brown.

The following mind map summarizes some of my visual thinking about The Great Visual Thinking Machine and is procedures and processes.

Who benefits from using TGVTM? Originally I developed it for adults to compensate for Cognitive impairment and Dementia (in many of various forms). Then I considered adults with typical aging processes and believe that it is just as relevant for them, especially if they want to have tools for combatting cognitive decline and disorders. So, every adult.

My conception of TGVTM was partially derived from Tony Buzan’s work on mind mapping; research and theory by J. Singer, J. Antrobus, and G. Huba on daydreaming; research and theory R Gardner, D. Jackson, and S. Messick as well as H. Witkin in individual differences in cognitive process and their relationship to personality and intelligence; R. Sternberg on cognition and intelligence; M. Rohde on sketchnoting and doodling; and S. Brown’s seminal publication on doodling. My ideas about how to implement TGVTM were heavily influenced by C. Griffiths monumental work on the program iMindMap expanding and computerizing Buzan’s theories of mind mapping). Of course, research and writings of dozens of others have also influenced in many different ways.

Oh, one other significant fact. I developed my entire theory and procedures between 2010 and the present (now 2019) during a period when I had cognitive impairment and dementia (of a type which is not Alzheimer’s Disease but rather a type of frontotemporal lobar degeneration) I started with a knowledge. The work started with ideas I had developed since the release of the computer program MindManager 2 a decade earlier and my experimentation with it and later versions.

As to the proof that The Great Visual Thinking Machine works, they are limited to the development of the method to personally assist me while having dementia and trying to lead a productive and full life with the condition. However before you run away muttering I’m nutz or live in a state where marijuana is legal,, consider the objective indices I would use to support the positive effects of The Great Visual Thinking Machine on me. Between 2012 and now (early 2919), I have built a following of about 135,000 on Twitter. I have about 5,000 additional followers on other social media platforms (Facebook, LinkedIn, Pinterest).  I wrote a well-reviewed book. I appear on many top 10, 25, or 100 lists of social media experts-influencers. I do my laundry, remember the places I loved most for vacations, have organized memories of everything from favorite movies and Allman Brothers songs to special moments and sporting events and concerts I went to. I’ve analyzed many daily-life decisions and their impacts for me and my family. Without the TGVTM I’ don’t believe I would have accomplished any of this, and the next post will explain why.

Click the images to expand them.

tgvtm™

 

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The focus of the blog is on the issues shown below. If you click on the image, it will expand.

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Click Links Below for Selected Posts

Dementia

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Huba’s Integrated Theory of Mind Modeling/Mapping

Writing in Mind Map

Case Management

Self Care

Caregiving

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Hubaisms Blog – WHY?

ALL

There are many ways to greatly dementia care that are very inexpensive. Web sites need to be brought to higher standards for their materials, and the sites need to be more friendly to persons with dementia and caregivers. More support groups are needed: there are almost none for people with non-Alzheimer’s dementia. This whole blog is about using visual thinking methods for streamlining dementia care. Some may find the suggestion that clergy and their religious congregations can provide huge amounts of help is controversial. I do not think so as many persons with dementia and their caregivers turn to spiritual leaders for counseling in times of medical and interpersonal crisis. Clergy need to have access to the most recent information available on dementia to share and explain along with referrals to agencies and professionals who may also provide information and social services. Dementia-friendly religious services for those with dementia are rarely, if ever, provided. Special religious services tailored to ensure the age, medical, and cognitive disabilities of some congregation could be provided on weekday afternoons.

I note that most of the ideas I have suggested are currently being implemented in various locations. We need to make these methods globally available. And we need to greatly increase the quality, quantity, and usability of information available to those who want to provide dementia care services.

These ideas are very inexpensive to implement, and in most case largely consist of assisting those already work hard on these issues.

A mind model (aka mind map) is shown below. Click on the image to expand it.

 

Ways to Improve Dementia Care Very Inexpensively

 

In 2010, I was diagnosed with one of the variants of FTD (PSP) in part because I came into the neurology department after a very serious fall coming out of a UNC stadium (fortunately, 100 feet from the UNC Hospital Emergency Room).  Later as my gait stabilized, it became clear that the diagnosis of behavioral variant FTD would be a better one for me as the behavioral and decision making symptoms of FTD had occurred (initially, in the years before diagnosis after the fall).

I do have some significant issues with my short term memory, especially of verbal materials (I remember faces but not names), but these are not my primary symptom as memory loss would be if I had young onset Alzheimer’s disease rather than young onset FTD. I have about 500 posts on this blogging specifying what mind mapping (or my more sophisticated variant, mind modeling) does for me. I usually talk about how it helps my decision making and learning of new things, but the natural tendency is to speak of mind mapping as a memory maintenance and enhancement method, which of course it also is. Mind mapping is also extremely useful for understanding patterns of your own behavior and focus on positive reactions to others rather than negative ones.

Here are some of the disorders that make up Frontotemporal Dementia (Disease). All involve a loss of decision making, planning, and judgment (Executive Function). For some the initial symptoms are a personality change while others start by having language problems understanding or producing language. Eventually most people with FTD (FTLD) have all three sets of symptoms. The other diseases (PSP, CBD, FTD with Parkinsonism, FTD with ALS) have initial symptoms of motor-mobility difficulties followed later by the behavioral and language problems.

Mind mapping may be so effective for use with dementia (and specifically FTD) because it is a good way to plan and make decisions, and promote judgment. It forces you to make associations between words and pictures which helps both in producing words and understanding information provided as a mind map better than a written document or verbal instructions.

And it is fun and feels artistic.

A mind model explaining some of these connections is shown below. As a reminder, I only contend that this method works for me. It may or may not work for you and should you choose to try this you should remember that I am only discussing my own observations of me.

Please click on the image to expand it.

Types of Frontotemporal DiseaseDementia and Artistic Mind Modeling as Cognitive-Behavioral Assistance

 

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Part 1 of this series can be accessed in a new window by clicking here. Frontotemporal Dementia — often associated with young onset as compared to Alzheimer’s disease and its late onset — has been shown to a potential relationship to artistic creativity among those who have the neurodegenerative condition.

I see my own work on this blog as an attempt to combine artistic impulses with information to potentially help myself and others with dementia.

Click on the image to expand it.

The  Long  Hawaiian  Shirt  Journey

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Clip art used under license.

 

 

Father’s Day was a little “complicated” in our family. Through my own stupidity (or arrogant “dumbness”) I managed to get myself dehydrated on Saturday from heat and sun exposure and lack of sufficient hydration. Turns out that I am taking two medications that may have interacted in that both work by regulating the kidney.

So with a very low blood pressure and dizziness and some temporary short cognitive responses, I was brought into the ER at 1 PM. We had been going to see a movie for Father’s Day before I stumbled getting out of the car.

It was an “interesting” day to say the least. Everything was fine less than eight hours later; I had rehydrated, the blood pressure came up and medication adjustments were made.

Never one to be turned away from trying to make lemonade out of lemons, I came up with the following mind map to explain what had happened and more importantly what may have failed in the healthcare system that ended up in my creation of a number of costs that were quite unnecessary and will be paid by the US Medicare insurance. My guess is that had $20-$50 annually have been available to help educate and monitor my self care behaviors through a dementia life plan customized for my medical and psychological issues and history of medical problems, we might have avoided several thousand dollars of emergency care caused by the combination of my unknowing risky behavior and the fact that I am taking two medications that may have jointly affected my physiology in an unusual way that interacted with hydration.

If we can develop Self Care Plans for individuals in the early stages of dementia we probably can avoid at least some unnecessary healthcare costs and some of the burden on unpaid, family caregivers.

It is also very important to further train healthcare providers about dealing with individuals with dementia. Doctors and nurses seem — like most people — to assume that those with dementia will be clearly “sick” in an easily discernable way. I am still literate (although increasingly I use the wrong words) and able to communicate in a way that greatly exceeds my true level of disease. But I cannot figure out stupid stuff like how avoid getting dehydrated to such a great degree and monitoring myself so that I do not end up in the ER while at the same time I can still discuss technical details with healthcare providers but not necessarily able to recall what was being said a few minutes (seconds) later or agreeing with provider’s logic but being unable to follow the same logical train of thought and action later on my own part. I think that doctors and nurses may overestimate how well the “average person with dementia” is functioning because most of the cases they see are late stage Alzheimer’s Disease and by comparison, people in the earlier stages who cannot figure out to stay out of the sun may still seem more like “typically aging individuals” rather than individuals with very significant neurocognitive issues.

My ideas in a MindModel (aka mind map). Click on the image to expand the MindModel.

Father's Day with Dementia in the Emergency Room Lessons Learned

 

 

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Ok, I may not remember your name unless I knew you years ago. I get confused when people speak to me, especially in loud and noisy settings or when I miss a word or two and cannot “fill it in from my archival storage.” My spelling is getting bad and my words shorter, although I will point out that I have spelled stoopid intentionally incorrectly for more than a decade. I tend to avoid social situations not only because they are confusing and I cannot screen simultaneous conversations from one another and have no awareness of either my tone or volume of voice and thus may decline an opportunity to go to a reception at the White House next week which for me would be a once in a lifetime event. I can usually spell arithmetic, but sometimes not; I probably look up the spelling of 50-100 words per day on Google when I am answering email or blogging or tweeting, but somedays I can spell a word and later not be able to spell the same word. I tweet dozens of times a day to 100,000+ followers but have to look up all but a dozen twitter IDs if I want to send a message to an individual. I do these incredibly complicated mind maps to make my ideas accessible to more than I could using words. I do not remember when TV programs I have liked for years air but have solved that problem with a DVR. And a lot of people who have to interact with me each day think I am dumb or slow or stupid and show it in their behavior toward me. Others are quite kind and understanding.

How do you think the the ones who think I am slow or dumb or stupid would react if I said, “I’m not stupid, damn it. I just have dementia.”

Think about that.

I’m not stupid, damn it. I just have dementia.

AND I HAVE ADJUSTED TO DEMENTIA IN MANY WAYS.

Let me repeat the whole message.

I’m not stupid, damn it. I just have dementia. AND I HAVE ADJUSTED TO DEMENTIA IN MANY WAYS.

Don’t treat others whose behaviors are “odd” or are judged by observers to “have Alzheimer’s” or another dementia as if they were dumb or stupid. Many are quite aware of at least of part of the behavior around them but may not express emotions nonverbally anymore or gaze at you while you are talking or respond in the words you expect.

They are not stupid, damn it. They just have dementia. And many adjust to dementia in many ways.

I was smart enough to put “darn” in the title to this post rather than “damn” as I suspect many of you find the euphemism more acceptable and my preferred original wording disrespectful. I personally use the phrase “damn it” to honor my grandfather, a proud New Englander who hailed from Vermont. Sort of like Bernie Sanders without Bernie’s tremendous social enlightenment (it was a different time when ignorance became bigotry and he had little religious tolerance but no racial intolerance at all and was a proud unionist).

I have a PhD degree from one of the best universities in the world and even though that does not guarantee I am not dumb or incredibly stoopid, it was necessary to be able to spell and speak coherently and add simple numbers and do fourth grade word problems in order to get the degree. I used to be able to remember hundreds of phone numbers and never had to carry an address book. Now I may not remember to call you back. But I am still aware enough to say to Siri or Alexa “what is 4227 – 3101” after I use a calculator to check myself and my fingers. And I hate any computer program that does not have a built-in spell checker. I need that spell checker a lot and it is not because my fingers do not work well.

I’m not stupid, damn it. I just have dementia. And I adjust to dementia in many ways.

I am quite aware that people respect me because of my writings on social media (although they may think I am a jerk because I espouse too many liberal causes, believe in letting Syrians and any others practicing Islam or those from Middle East origins into the USA just like any other people, and thinking a Trump presidency would be a coronation and disaster). People on the street may not see me as much more than a prematurely old-looking man, not always well-dressed and freshly shaved, walking looking down so as not to fall, and who asks you to repeat many sentences because he does not understand you the third time you say something.

I am spending more time now at a local community that features in-home and multistage assisted living of various kinds. Sometime soon I will move in there because it is time, although I do not need much assistance now nor should I for a while. At lunch and walking around I see lots of people who cannot figure out the lunch menu at times (I am included) but can discuss their former high profile careers (many were university professors at UNC and Duke), the looniness of Donald Trump, and favorite classical composers while not knowing how to get somewhere across town. Tomorrow they may not remember my name or the conversation (I forget names but remember conversations) we had yesterday until at some time they say, “Oh you were the guy I was talking to about the UNC basketball game when we were here yesterday.” And, although Donald Trump seems to be quite a topic of conversation at times (usually in proximity of a television set when CNN is on) among those I identify as having significant cognitive impairment/dementia, I have yet to hear a single person say anything nice about the man. Certain types of wisdom seem to stay with you.

They are not stupid, damn it. They just have dementia. And they adjust to dementia in many ways.

We are not stupid, damn it. We just have dementia. And we adjust to dementia in many ways.

A few thoughts in a mind map. Click on the image to expand it.

PERSONS  WITH  DEMENTIA ..... 2

The presentation below is an alternate way of display the mind map above. A few portions of the mind map are shown at a time. The presentation will run automatically or click the pause button in the presentation and use the arrow keys to go back and forth manually.

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My grandfather lived to be 87. He had dementia for at least the last 10-15 years, probably longer. He never failed to light up in a smile and he never heard a baseball game on the radio (or watched on TV) that he could not understand. And heck, right until the end, he never voted for a Republican.

He wasn’t stupid, damn it. He just had dementia. But he knew which political party would treat regular guys who served in WWI fairly and in spite of battling dementia and not smiling much any more, at the age of 84 had my mother help him buy a new suit and insisted on coming to my PhD graduation. Later that day during a moment of lucidity, he told me his family had progressed from the first one to graduate from high school (him) to the first one to graduate from college and a masters’ program (my Dad), and now me. He always loved the USA and democracy above everything and was proud his family had made it in his beloved country. And to the day he died, if there was a Red Sox game on the radio, he was listening to it. And understanding it. And always rooting for any team playing the New York Yankees, something he had learned to do way back in the days when professional baseball was just starting.

Oh, and before you say that this post is too well written to have been done by someone with many cognitive deficits, take into account that I worked on it for more than a week and wrote from a number of mind maps and other diagrams. I have been thinking about these ideas for several years and I went through more than a dozen drafts, often writing just a few sentences at a time.

I adjust. Please try to adjust to that old man who bends over and looks at the sidewalk when he walks, may not care about coordinating clothing as it takes him back to his youth in the late 1960s to be uniquely dressed, and does not necessarily shave until after lunch because it is much easier to use a razor or shaver at the times of the day when his hands have less tremor.

If everyone adjusts just a little more to people with dementia and people with dementia try hard to adjust a little more as they decline, we will have communities that become dementia friendly naturally. And guess what? Dementia-friendly communities will be less of a burden to taxpayers because people who can continue to live in communities at least semi-autonomously do not need as much caregiver attention or healthcare. Think about that carefully. Help create a community easier for people with dementia to navigate, make them happier, lower taxes, and make your friends and neighbors who are family caregivers a little more relaxed. Who could argue against such a plan?

Certainly not me or the volunteers throughout the world working hard to have dementia-friendly communities.

I studied the Diagnostic and Statistical Manual, Version 5 (or DSM 5) of the American Psychiatric Association over the past week.

I have concluded that the terminology developed by the psychiatrists is superior to that traditionally used to describe different types of dementia in the medical literature and the International Classification of Diseases, now Version 10 (or ICD-10).

There is a direct correspondence between DSM-5 and ICD-10 (or the earlier Version 9) diagnoses so nobody is really being reclassified because of the newer DSM-5 terminology. BUT, the terminology is MUCH clearer and I think it will be much more useful for the general public, people with dementia, and other non-physicians to think about the conditions that cause dementia such as Alzheimer’s Disease, Lewy Body Dementia, Frontotemporal Lobar Degeneration (Dementia), Huntington’s Disease and many others in this framework which makes much clearer the relationship of the many diagnoses made of brain diseases and conditions.

The explanations available to non-physicians are much simpler using the DSM-5 terminology and the psychiatrists have done a better job of formulating neurocognitive disorder (major and minor) in their diagnostic model than the standard way of doing so. It is, of course, extremely important that psychiatrists and neurologists develop improved terminologies for brain diseases and conditions so as to guide public awareness, research, and communication.

Many more posts about this in the next few weeks. I personally believe that adopting the nomenclature of the psychiatrists will do much to decrease the confusion that can be caused by reading the information provided in books and on websites.

Labelling the neurocognitive diseases in the way that the psychiatrists have goes a long way to making the conditions understandable by those who have them, their caregivers, and decision makers who approve treatment and research funds.

More unfolding, much of it in the form of mind maps and other graphics. Stay tuned.

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Geek Boy - Two Thumbs Up

 

 

If you do not use visual methods to enhance your memory and powers of decision making and ability to prioritize and methods of communication you are a fool.

How do I know this? Do I look like a fool to you? Have you seen all of the visual stuff on this blog site?

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Do You Have Visual ...

I have started to add this logo to many of my posts.

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Here is what it means.

In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among diseases).

Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.

Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.

For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.

I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 95,000 followers on Twitter, 350 friends on Facebook, more than 2,000 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.

If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.

More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.

Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.

Every Day I Use Mind Maps to ...

Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.

These core clinical core criteria apply to all forms of dementia. To diagnose specific types of dementia originating from different conditions, additional criteria apply. For example, there are additional clinical criteria for the diagnosis of Alzheimer’s disease.

In the United States, for dementia a PHYSICIAN (AKA MEDICAL DOCTOR) has to confirm #1, #2, #3, and #4 as stated in the diagram. For branch 5, the expert needs to find at least 2 of the 5 stated changes in functioning. Biomarkers may also be examined during various stages of diagnosis.

DO NOT TRY TO DIAGNOSE YOURSELF OR A FRIEND OR FAMILY MEMBER EVEN IF YOU ARE A PHYSICIAN. These clinical criteria need to be addressed by an independent, experienced physician, ideally a neurologist or a psychiatrist. That physician will need to examine the potential patient in person. If you question the diagnosis by the original physician, see another independent medical doctor to confirm the subjective judgments that go into diagnosing dementia.

Identifying dementia as early as possible may make it easier to control symptoms and productively prepare for the future. That is what happened for me. Seek the advice of a medical doctor. You need not be over 65 to have dementia. A skilled neurological diagnostician may be able to diagnose the problem decades before you are 65.

The author of this mind map is a retired psychologist living with dementia and does not have the skills or licensure to make a diagnosis of dementia of any form. This blog post and the mind map are not medical advice nor do they permit you to diagnose yourself or another person. GO SEE A MEDICAL DOCTOR if you have a question or concern about yourself or another individual and wish to obtain an expert diagnosis from an individual trained and licensed to render such a judgment.

The citation for the journal article giving the criteria is shown within the mind map that follows. The recommendations come from a large Workgroup on Diagnostic Guidelines for Alzheimer’s Disease funded by the US National Institute on Aging and the Alzheimer’s Association and were published in 2011 in the journal Alzheimer’s & Dementia in a paper written by G McKhann and collaborators.

Click on the diagram to expand it.

FIVE CORE  CLINICAL CRITERIA  FOR ALL-CAUSE  DEMENTIA

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In the previous blog post, I showed myself creating a mind map over a 39 minute period. It was a pretty smooth experience. I have dementia and my blog Hubaisms.com uses mind maps to explain my experiences. I also use mind maps to guide my day-to-day life.

As context, I have a PhD in Psychology from a highly prestigious US university, 35 years experience as a researcher and CEO of a “high-tech” management and program evaluation consulting firm I founded in 1988, and a diagnosis of neurodegenerative disease (NOT Alzheimer’s disease) made when I was 59 years old. Using extant research, it is reasonable to say that I had the condition at least as early as the age of 55 and probably earlier, especially since I began treatment with a psychiatrist (a common occurrence for those with neurodegenerative disease since the symptoms first appear psychological before later appearing neurological) at that time. I am now 64 years old. I have been considered to have been partially disabled (by my insurance company) since late mid 2009 and fully disabled by the same insurer and the US Social Security Agency when I had to retire at the age of 60 in 2011. Both the insurer and the SSA consulted with independent neurologists to confirm the diagnoses and advice of my own physicians.

Since 2010 I have used Buzan style organic mind mapping to help me communicate and plan, organize, make decisions, remember, and maintain some skills I once had. The method works FOR ME and I am quite grateful to Tony Buzan for his pioneering work that allowed me to embark on my research and trial-and-error search for some tools that would help me.

Here is a second mind mapping session I recorded about 16 hours after the first one (around 9 AM today) BEFORE taking any medication for the day. The mind map is one which is probably easier to develop under normal circumstances than the first.

As you will see in the video I had a lot of stop and start periods when I lost my place as I got caught up in thought about what I wanted to create, but I was able to continue productively as I used my prior work to regroup.

Nonetheless, I think I did a pretty job that just had a lower productivity rate (since it was an easier map to create) to complete.

The map yesterday was created in the late afternoon after I had taken several doses (morning and afternoon) of medications for attention, mood stabilization, tremor control, and cognitive functioning. The medications do not produce large effects in my cognition, but in this case they did focus my attention to some degree but have not been shown to be effective for the type of neurodegenerative disease I have and are being used off-label by my doctors (as is typically done by most doctors with a hope and prayer they will control symptoms to at least a small degree). This morning, I worked on the mind map before taking any medication for the day.

The fact that I take certain medications prescribed by a very skilled and experienced group of doctors and myself use mind mapping in conjunction with the medication does not constitute medical advice for you in any way. See your doctor if you have my problems or appear to be developing them. You are not me, you may not have the same disorder (if any), and dozen of other factors need to be considered for each individual when medications are prescribed and cognitive behavior techniques are used. Like my medications, mind mapping has not be proven to work in formal clinical trials and the fact that I have concluded that it helps greatly FOR ME, does not mean it will work for you or anyone else.

Neither the medications nor mind mapping will cure my dementia or probably slow it down. That is OK. I use both because I perceive the medications and the cognitive mapping improve my quality of life to some degree. And with dementia, even a few extra good hours or days is an incredible gift.

The video from yesterday covers a 39 minute work period. The video from today covers a 36 minute period. In both cases, I conceived of the idea and then started immediate work on it. I neither carefully planned the map before starting recording and this is the first attempt. No practice was done before turning on the recording program.

My morning dosages of medications usually leave me with a very bad headache which stops in a couple of hours. Since I had not taken medication before or during this video session, I did not have a headache.

Note that both videos use time lapse settings so that 8 minutes are portrayed as 1 minute.

Final mind map. Click image to expand.

NEURODEGENERATIVE  DISEASE

So you’re in your fifties. One day the doctor diagnoses the cause of your crummy mood, personality changes, increasing social isolation, difficulty making decisions, memory loss, anger, or increasing financial instability as frontotemporal dementia (frontotemporal lobar degeneration), Lewy Body dementia, early Alzheimer’s disease, multiple system atrophy, ALS, corticobasal degeneration, progressive supranuclear palsy, Huntington’s disease, Parkinson’s disease, Parkinsonism, or some combination of the preceding.

Heck you have barely even heard of most of these. Pretty much you can say that in any of these conditions various parts of your brain are failing leading to the condition that more fear far more than any other medical condition, the Big D, for DEMENTIA.

You get some commonsense (and old wives’ tale) advice from friends, neighbors, newspaper columnists, the MD and PhD who work for Oprah, Oprah, a bunch of web sites, and probably at least some of your doctors — start doing crossword puzzles and practice arithmetic.

OK. Darn, I have always hated crossword puzzles as a waste of good time better used watching ESPN. I prefer matrix algebra and calculus to arithmetic problems, although I do like to watch how the cooks measure foodstuffs on Chopped using such honored traditional techniques such as “pinches,” “handfuls,” “looks like a pound,” “feels like a quart,” and other examples of the special mathematics of the kitchen including the definitive one of ratios so you can scale your cupcake recipe from one to 37 which are most often correctly applied on baking shows.

So you have what my own senior neurological consultant referred to as a “terrible, terrible disease” of the brain. Do you pull out your iPad and scramble to complete innumerable arithmetic games and crossword puzzles?

Hell no. You congratulate yourself that you have learned those useful and continuing visual thinking skills and tools and used them for the past 40 years to enhance your life and career and education and now you open up the desk drawer where you store your mind maps, concept maps, sketchnotes, photographs, and charts.

Get with the program. Perfect this skill.

perfect this skill

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Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get the information to you some alternate ways.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of productivity and self sufficiency.

Geek Boy - Two Thumbs Up

I have started to add this logo to many of my posts.

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Here is what it means.

In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor symptoms are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among dementia-syndrome diseases). Over the years, my symptoms have shifted and now the working diagnosis is FTD with Parkinsonism or FTLD.

Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.

Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.

For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.

I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 85,000 followers (now up to 100,000 followers 8 months after writing this originally in April 2015) on Twitter, 350 friends on Facebook, more than 1,500 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.

I like to think of myself as a working, ongoing experiment in maximizing the value of neuroplasticity.

If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.

Ongoing work is posted on this blog and the work has gotten increasingly more complex in the past 12 months.

More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.

Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.

Click on the image to expand it.

Every Day I Use Mind Maps to ...

Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.

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.

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[Star Trek may have incorporated the following idea into some of its episodes.]

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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).

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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.

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.

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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.

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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..

Available at major Internet book sellers.

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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.

Click image to expand.

IMPROVING GOVERNMENT INFORMATIONAL WEB SITES

Comedy and tragedy theatrical masks

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.

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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.

Missing Link  Reducing the Effects  of Dementia with  Mind Mapping  (Huba's Theory)

 

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.

Google Glass &  Cognitive Impairment  Early Dementia

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.

 

In the past I have blogged about my suggestion that Public Health students learn to use methods like mind maps and other visualizations to make health brochures and posters more informative and compelling to the public. Here I am going to show some examples.

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.]

For each image, click to expand.

The American Medical Association has this very informative page on its web site.

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I believe that the following mind map is better for explaining the information.

Typical Aging or Dementia

[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.

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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.

10  Warning  Signs of  Alzheimer's  Disease

[I acknowledge the fact that various mind map “artists” can make this map more visually appealing and I see this as a first draft.]

Remember the “gold standard” research paradigm for determining if a medical treatment works: the DOUBLE BLIND, RANDOM ASSIGNMENT EXPERIMENT?

The design has historically been considered the best way to “prove” that new medical interventions work, especially if the experiment is replicated a number of times by different research teams. By the double blind (neither the treating medical team nor the patient know whether the patient is taking a placebo or active medication) design, investigators expect to negate the placebo effects caused by patient or medical staff beliefs that the “blue pill” is working.

A key part of virtually all double-blind research designs is the assumption that all patient expectations and reports are independent. This assumption is made because of the statistical requirements necessary to determine whether a drug has had a “significantly larger effect” as compared to a placebo. Making this assumption has been a “standard research design” feature since long before I was born more than 60 years ago.

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Google the name of a new drug in clinical trials. You will find many (hundreds, thousands) of posts on blogs, bulletin boards for people with the conditions being treated with the experimental drug, and social media, especially Twitter and Facebook. Early in most clinical trials participants start to post and question one another about their presumed active treatment or placebo status and whether those who guess they are in the experimental condition think the drug is working or not. Since the treatments are of interest to many people world-wide who are not being treated with effective pharmaceuticals, the interest is much greater than just among those in the study.

Google the name of a new drug being suggested for the treatment of a rare or orphan disease that has had no effective treatments to date and you will find this phenomenon particularly prevalent for both patients and caregivers. Hope springs eternal (which it SHOULD) but it also can effect the research design. Obviously data that are “self reported” from patient or caregiver questionnaires can be affected by Internet “the guy in Wyoming says” or the caregiver of “the woman in Florida.”

OK you say, but medical laboratory tests and clinical observations will not be affected because these indices cannot be changed by patient belief they are in the experimental or placebo conditions. Hhmmm, Sam in Seattle just posted that he thinks that he in the experimental condition and that his “saved my life” treatment works especially well if you walk 90 minutes a day or take a specific diet supplement or have a berry-and-cream diet. Mary in Maine blogs the observation that her treatment is not working so she must be in the placebo condition and becomes very depressed and subsequently makes a lot of changes in her lifestyle, often forgetting to take the other medications she reported using daily before the placebo or experimental assignment was made.

Do we have research designs for the amount of research participant visible (blogs, tweets, bulletin boards) and invisible (email, phone) communication going on during a clinical trial? No. Does this communication make a difference in what the statistical tests of efficacy will report? Probably. And can we ever track the invisible communications going on by email? Note that patients who do not wish to disclose their medical status will be more likely to use “private” email than the public blog and bulletin board methods.

Want an example. Google davunetide. This was supposed to be a miracle drug for the very rare neurodegenerative condition PSP. The company (Allon) that developed the drug received huge tax incentives in the USA to potentially market an effective drug for a neglected condition. The company, of course, was well aware that after getting huge tax incentives to develop the pharmaceutical, if the drug were to prove effective in reducing cognitive problems (as was thought), it would then be used with the much more common (and lucrative from the standpoint of Big Pharma) neurodegenerative disorders (Alzheimer’s, Parkinson’s) and schizophrenia.

Patients scrambled to get into the trial because an experimental medication was better than no medication (as was assumed, although not necessarily true) and the odds were 50/50 of getting the active pills.

Patients and caregivers communicated for more than a year, with the conversations involving patients from around the world. In my opinion, the communications probably increased the placebo effect, although I have no data nor statistical tests of “prove” this and it is pure conjecture on my part.

The trial failed miserably. Interestingly, within a few weeks after announcing the results, the senior investigators who developed and tested the treatment had left the employ of Allon. Immediately after the release of the results, clinical trial participants (the caregivers more than the patients) started trading stories on the Internet.

Time for getting our thinking hats on. I worked on methodological problems like this for 30+ years, and I have no solution, nor do I think this problem is going to be solved by any individual. Teams of #medical, #behavioral, #communication, and #statistical professionals need to be formed if we want to be able to accurately assess the effects of a new medication.

Click on the image to expand.

Clinical Trial  Double-Blind  Treatment Evaluation  in the Era of the Internet

I’ve been writing a lot recently about rare and orphan diseases, especially those that are associated with dementia (which is NOT synonymous with Alzheimer’s disease). Dementia is (obviously) a huge untreatable condition with a huge impact on the healthcare system, both for those with dementia and their caregivers, and those who provide and fund care.

I looked at YouTube today to see how much video information was on the Internet about conditions — Corticobasal Dementia CBD; Frontotemporal Dementia/Degeneration FTD; Progressive Supranuclear Palsy PSP. These are very rare diseases both in the USA and world wide. There are no treatments for any of these conditions although pharmaceuticals are sometimes used off-label to attempt to control symptoms and various behavioral assistance (physical therapy, occupational therapy, speech therapy, case management, support groups, caregiver education and supports) is often offered to improve the quality of life of patients and caregivers.

Most physicians in non-neurological specialties have not studied these conditions nor know much about them.

For the three conditions I examined there were dozens if not hundreds of videos of clinical symposia, caregiver observations, patient interviews and observations, and timelines of the disease progression of individuals and especially a few celebrities.

Especially with rare diseases, where there is not a lot of information in the media for the public to consult, videos on YouTube can make a great contribution to patient-caregiver-professional education and an improvement through education of the quality of life for patients and their caregivers.

What is NOT on YouTube?

I see no assessments of the quality (validity, reliability, applicability) of the videos.

Why not have some professionals look at the videos, and rate them for accuracy. Really. And then create a video.

There is some awesome information currently on YouTube about rare and orphan diseases. There are also huge holes in the aggregate collection of videos in that many important topics are not discussed. And some of the videos are just plain not reflective of current medical standards or state-of-the-art knowledge.

I’d urge professional groups and #YouTube to look at getting a rating system for these videos of all diseases-conditions, and especially the rare and orphan diseases. There are huge benefits of this information but also some errors that need to be fixed so that patients and caregivers in search of a cure where there is none available at this time are not misled.

#YouTube is a huge resource to individuals and their caregivers who must deal with rare and orphan diseases without effective treatments. Hopefully, the videos will be used to educate and support, but incorrect information may unrealistically raise the hopes of patients and caregivers that these diseases can be treated with unapproved medical treatment or ineffective alternative approaches. Or, videos of late stage sufferers from a disease can be extremely scary to patients and caregivers and not permit them to focus on maximizing the quality of the left before the late stages of a disease.

Let’s get some professional video comments from established experts who CAN talk to REAL folks in a way they can understand up on YouTube. Great information should be widely disseminated; incorrect or damaging information should not be allowed to be presented under “freedom of speech” laws without professional comment about probable inaccuracies.

Correct and supportive and understandable videos would go a long way to help patients for whom there are not established and efficacious treatments have the best possible quality of life.

Now that would be a huge contribution. Heck, I’d even give Google a tax deduction (and you will never hear me mention such a suggestion in any other context) for getting accurate and REVIEWED video content on rare and orphan diseases available to all in a number of different languages.

Click on the images to expand.

How YouTube Can Be Even More  Helpful to Those Impacted  by Rare and Orphan Diseases

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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.

Types of Dementia

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.]

Types of Dementia 9 29 14 types of dementia