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social, health, political imagery through the lens of G J Huba PhD © 2012-2021

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Tweets from July 19, 2016. While shortened for Twitter’s character limit, the meaning of these tweets should be fairly transparent. I believe that most of the so-called Dementia “Organizations” or “Charities” need huge restructurings of their operations in order to actually understand and attend to the needs of Persons with Dementia.

If you want to learn about non-profit organization that does its job extremely well (albeit in a different area), search information on the AIDS Healthcare Foundation in Los Angeles. Superb job. Big bang for the buck. And follow them on Twitter at @aidshealthcare.

 

 

LightBulbsHead

Ever wonder what the difference is between Mind Map techniques developed by Buzan and Mind Model theory and techniques developed by me?

Probably not.

At any rate, just in case you have an itch to figure out the difference later, here is a cheat sheet in a Mind Model. Click on the image to expand it.

Mind Model vs Organic-Style Mind Map

Did that get rid of the itch?

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.

I have certainly had a number of these feelings at times as I have gone through various stages of neurodegenerative disease. But you can fight back and live well with dementia.

Click on the map to expand it.

 

 

Some Feelings During Cognitive Decline to Dementia2

For many — myself included — it is hard to keep track of the detail of a life. There are contacts and notes and the darn records and all kinds of other data collection, data recording, and conceptual data analysis as in making decisions. Mind maps and other devices can help motivate and aid all people in collecting and recording the details of their lives.

Now think how difficult it may be to keep track of the details in the life of a person whose ability to remember or analyze or plan or make associations is impaired and who feels less motivated than ever to keep track of day-to-day events and thus CONTINUE TO LIVE INDEPENDENTLY FOR AS LONG AS POSSIBLE. Bright, artistic, interesting mind maps can help a person see all the pieces, organize a little better, and perhaps remember things when one can no longer expect to remember appointments, birthdays, and how to make a fancy sandwich or what to buy every week at the grocery store.

Here’s some things mind maps can make easier for the cognitively impaired, those in early stages of dementia, those unmotivated to be organized or to plan, and everybody else.

Click on the image to expand,

mind maps may help cognitively impaired ...

If you are becoming cognitively impaired or transitioning into full blown dementia, mind maps MIGHT be useful for you to communicate, think, and remember.

Many different sources can help you prepare maps and use them to communicate with you. Or, you can make them for yourself and to inform others. For instance, I usually take a mind map along when I have a routine medical appointment. All of the doctors I have used them with has commented that the maps are a very easy and thorough way to understand what has been going over 3-, 6-, or 12-months. Probably quite useful for those with cognitive impairment/demential or those visiting a doctor for an infection, skin examination, or just a regular physical exam.

Click image to expand.

MIND MAPS THAT MAY BE VERY USEFUL FOR THOSE WITH COGNITIVE IMPAIRMENT CAN BE MADE BY ...

 

You heard it here first …

Taking information from a dubious (wrong!) source and putting it into a mind map does not make the information more credible. Bad advice is bad advice whether is is well-formatted and pretty or not.

Talk to a healthcare provider or seek medical and psychological information, whether in a traditional form or a mind map, from a highly credible online source or a highly credible book.

P T Barnum would have used mind maps. After all, there is a sucker born every minute.

Know the source behind the map.

Click image to expand.

2Who are You Most Information in Psychological or Medical Mind Maps on the Internet is Garbage

 

stop making publicizing your disease your end goal. You and the other 350 or 3,000 or 25,000 or 199,999 people with the disease will hardly be heard above the shouts of those advocating for funds for cancer, coronary disease, diabetes, HIV/AIDs and other diseases affecting many medically and/or politically.

And in the current system of new drug development, Big Pharma is going to be more interested in developing treatments for gastroenterological disease (heartburn), STDs (avoidable), erectile dysfunction, safer birth control, cancer, heart disease, and obesity.

Get smart.

Your 5,000 sufferers should collaborate with the 350 individuals with another disease and the 199,999 with another and all of the rest of them to be a large and huge advocacy group for encouraging change. Your illness group may not be the first to get attention if changes are made, but somebody will be and as treatments are developed for one rare disease they might also be applicable to other related rare diseases.

This is clearly a situation in whch cooperating with those with other rare diseases will ultimately yield better results for all than screaming ME FIRST on the Internet in social media.

The existing laws and administrative rules probably do not go far enough in encouraging drug companies to develop pharmaceuticals for rare and orphan diseases. Advocate for better incentives and decreased bureaucracy for developing new pharmaceuticals to treat a few thousand. Maybe even the staid Nobel Prize committee will even make an award to somebody who makes a huge research contribution that advances the development of treatments for a rare disease and top research universities will create endowed professorships for high talented physicians and others who study a rare disease.

Click image to expand.

ENCOURAGE MORE RESEARCH ON RARE AND ORPHAN DISEASES

The only way I see to develop effective medical treatments and care models for many of the thousands of rare diseases is to pool the RESEARCH resources that individual countries are spending and the data countries are collecting about individual rare diseases and put those research resources under international control for prioritizing research agenda and ensuring public access to ALL results and research data.

Yes, I know the USA (probably the largest resource contributor) Congress will go in front of the television cameras and say that the failure of the United Nations and the disproportionate contributions to a pooled resource fund will ensure failure. They will point to the failure of the world to effectively coordinate collaborative research on HIV/AIDS and point to politics, homophobia, disrespect, and the hatred of American politics by certain national and fundamentalist groups and say we would be wasting our money by letting Africans and Arabs and the Russians and Chinese and Indians and Asians and South Americans collaborate with the USA on research and ensuring that research leads to effective treatments for at least some rare diseases.

Enough already. Let’s rise to the occasion of solving resource limitations in studying rare diseases and get an effective mechanism in place for expanding the impact of admittedly small research efforts by individual countries through international cooperation. I trust the governments of the world to collaborate, contribute as they can, and help us start to get some of these diseases treatable. Disease knows no boundaries.

In the last century we collectively developed very advanced medical research techniques. In this century we need to use these methods to solve all of the medical problems possible by putting aside the nonsense politics and nationalism and individual egos and predatory profits and focus on solving many medical issues and ensuring access to effective treatment world wide.

Here’s a way to start. Any yes, this is a test of our humanity and commitment to universal human rights of which medical treatment is but one. But let’s start somewhere that should be relatively easy to agree on (and let a few hundred angry politicians in the USA know that the world considers them bratty children and cannot tolerate their obstructionist and oppositional behavior).

Click on the image to expand. And let’s start the process of collaboration.

rare diseases time for effective international cooperation

EU rare disease rare disease

Related articles

Mind mapping is a wonderful tool. Many use it to inform others of important facts and make sure those facts are remembered, understood within context, associated as appropriate with other knowledge, communicated well, and result in learning. I endorse the successful use of mind mapping.

Mind mapping is a wonderful tool for informing.

Mind mapping is a wonderful tool for misinforming.

Think about this. If the method makes the learning of “good” information faster and more accurate, it does the same thing for “bad” information, idea garbage, or propaganda.

You need good information to map. You know, the kind that is scientifically proven, well interpreted, important, replicable, unbiased. You know what I mean. (The kind of good information that would never make it onto the Fox Cable network.)

So it is really simple. Show me the source of the information and what evidence supports it. I will decide if it is a diamond or zirconium. Nourishing or poison. Message from heaven or hell. Mac or PC.

Do not tell me you have a map of some important psychological issue when you do not have a single citation to replicable science, or at least well-accepted theory, anywhere in the map or the accompanying text.

The problem of presenting bad information and helping others learn it well is probably the most important when the content is derived from medicine, healthcare, psychology, or education. Personally I care less if a business person hires the wrong management consultant and buys the Brooklyn Bridge, but that is a matter of personal preference and I still would not like to see shareholders hurt. You want to teach it in a way that improves the chances that it is learned? Make sure it is true.

A mind map is a METHOD. The mind map should be used as a METHOD to accurately report correct, important information. A mind map may make information look more valid or important than it is, so the author of the map has to be responsible fully researching the information to be presented BEFORE MAPPING. To map information that you do not fully understand is doing a disservice both to the reader and to your reputation.

Click on the image (twice) to fully expand.

Hypocrisy of Some Mind Map Users

I guess it’s just me … I search Google for sites with “psychology mind maps” and I get lotsa pages returned. Of course very FEW of these pages let you know where the ideas, recommendations, and organization comes from. That makes me pretty pissed off.

I have a simple rule for evaluating psycho-pop, psycho-babble, psycho-art, and psycho-schmaltz: if the author (artist, developer) cannot prove to me that the information came from a credible source and is being communicated by a credible source, I assume it is psycho-fantasy and just walk (actually run) away.

Here’s a few things to ask about before you go ahead and change your job, spouse, running shoes, or haircut because somebody gives you some magic MBTI letters, a number on a test published in a self-magazine, or advice that must be right because it appears in a pretty mind map.

I love great psychology content conveyed in an easy to understand manner. I hope I produce some. Most do not produce anything except profits. Know what you are buying (and staking your life on) when you get information from a book, TV, the Internet, text, or a graphic.

Please click on the diagram to zoom in.

Don't Believe a Psychology (Self Help) Mind Map Unless it Tells You

A Life in Hats

Click on the image to enlarge it.

Symbols bring back a lot of memories. 1951 and being born (literally) in that tiny corner of the Bronx where Yankee Stadium faced the Polo Grounds (home of the New York, now San Francisco, Giants). My Dad told a story of studying for his college classes while caring for me as an infant and listening to the sounds coming from the two ball parks on the same summer evening. 1957 was the start of a life and elementary school in Massachusetts where my grandfather was the world’s longest suffering Boston Red Sox fan. In 1968 I left high school after 11th grade without graduating with the intention of being a physicist, discovered psychology soon thereafter, and graduated from Fordham College in 1972. In 1976 I left Yale after completing my PhD program. The Yale hat is the most important one of my life. 77 saw me at the University of Minnesota freezing my butt off and the next year I was in Los Angeles at UCLA warming it up. In 1980 I received my psychologist license and then went through the 1980s and 1990s as a committed, harried, stressed out Los Angeleno. In 1988 I started my own company and promptly appointed myself president. The 2000s were a time for becoming a committed North Carolinian, relaxing, and learning to say y’all. 9/11, of course, was the day most Americans started rethinking many issues in their lives.

The important part of this timeline is that these simple symbols mean a lot to ME and each evokes hundreds of direct memories and thousands of extended associations.

There is a lot to be said about trying techniques like this timeline to bring back cherished memories that you haven’t thought about in a while. Maybe the right symbols for you are concerts or movies or births or vacations or stages in the lives of your family members. Consider using symbols; a lot of our memories are encoded around images and not around words.

The University of Minnesota hat evokes some really funny stories like buying an ice cream cone in 20 degree weather (probably in October or April) from an outside vendor and walking down the street not having to worry about drips. Or playing marathon games of pinball or the first video games (pong, pacman) with a fellow assistant professor. That California Angels hat makes me think of standing in line from 2am on to purchase tickets for the American League (baseball) championships and then two or threes weeks later standing in line all night to get opening Saturday tickets for the Empire Strikes Back and becoming one of the first to know Darth Vader was Luke Skywalker’s father. Little things, big things, all stringing together in my memory from various symbols.

You might want to try this yourself. Works for me; may work for you too.

Aside 1: My grandfather had Alzheimer’s disease. Any time you put a Red Sox symbol in front of him you heard about Ted Williams, and the damn NY Yankees, and the Green Monster, and the times he took me to minor league baseball games as a kid, and how good (really bad) I was at baseball, etc. My baseball memories of him are those of the years before the dementia when he multi-tasked (in the 1960s) by having TWO different baseball games going on the radio at once (cacophony in that house) and a baseball game on TV. At times he was reading the then new magazine Sports Illustrated at the same time or the local sports section. If you asked him what had happened recently in any of the three games, he would tell you the last 10 plays or so or what Carl Yastremski had done in his at bats that day. And yes, he took me to at least 50 minor league (AA; Springfield Giants) baseball games every spring and summer. And I’m pretty sure he purchased a hot dog and popcorn for me at every game where we always sat in the same seats behind home plate.

Aside 2: If you look around my office or other living space, you will see that it is filled with small symbols that evoke memories (in my case baseball hats, pens, coffee mugs from meetings and vacations and schools, old office equipment in a big stack). If you look around most homes, you will see something parallel to my office. Why did you think we all patronize the souvenir shops at the national parks and airports and sports stadiums and try to keep our kids out but only half-heartedly? Symbols to organize and elicit memories.

The Old …

image

The Current …

image

And the Ideal

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  • Click on images to zoom.
  • Note that both the placement of the circles AND the front to back placement are significant and intentional.

I wouldn’t go on a bus trip with a driver who is unlicensed. Would you?

Who is driving the Big Data bus? Data scientists? Mindless algorithms? Content experts and their teams of data scientist support staff? Marketing? Security firms (including those run by governments)? Terrorists?

I say this once, I will say this a million times … Content is Queen.

Algorithms that are primarily empirical without an understanding of the validity of the data being analyzed and the theoretical issues are dangerous.

An algorithm can predict — and I have no doubt several are doing so at this minute — how happy I will be on a global question (how happy are you?) or a behavioral index (at a sporting event, at the bank cashing a check, four days after the death of a parent) or the perceptions of others (just got tagged in somebody’s photo, got mentioned in a tweet, had a happy blog entry, had  birthday, just had a child born, got back a favorable medical test result, used a smiley face).

I have observed and analyzed and proposed new ways of measuring “happiness” and “anxiety” and “grieving” and “intelligence” for 40 years. I don’t really know what “happiness” or “anxiety” or “grieving” or “intelligence” is although I do know a lot about how experts have tried to define these constructs. I do know that a blind algorithm is not going to answer the question of what “happiness” is.

Do you want an algorithm driving the bus or someone who knows the limits of current data? I don’t want a blind algorithm predicting whether I am “happy” (and happy enough to buy something). I don’t want a blind algorithm predicting the economy. I don’t want a blind algorithm predicting how many healthcare visits I should receive under health insurance.

Content is Queen. The algorithms that drive the organization of Big Data need to be guided by content specialists (psychologists, sociologists, physicians, nurses, economists, physicists, chemists, bioelectrical engineers, etc.) not data scientists without expertise in one or more of the relevant content fields.

If the Queen rules, all will probably be well in the kingdom. If blind algorithms rule we probably will end up as batteries in The Matrix.

I vote (before it is too late) for the monarchy of content. I am not a battery.

candy 5codeHubaisms

Evaluation 4

I spent 35 years studying more than a thousand health and social care systems designed to serve the most underserved, disenfranchised, and poor members of our society. These programs were located in 38 states and most major cities of the United States. I think we know what makes a service system successful. Here are my conclusions. And most of these changes are not necessarily expensive to make.

Even though I tend to vote Democratic [the Dems are really too conservative for me, not to mention pretty arrogant and not so smart but the best I can vote for], I think that this is a very smart statement by a very smart Republican physician about the absurdity of the current healthcare reforms. Unfortunately, Romneycare or doing nothing will be worse and Obamacare is all we have right now that could make it through a Congress of bozos from both parties.

The link above is to the viral version of the video (almost 2M downloads as of this morning). There is also a full 12 minute version. The viral version is taken from the first 2 minutes.

A link to the full version is given below.

In spite of our differences on healthcare reform, I would certainly like to see Dr. Beller at the table in further discussions about the national healthcare system. She has a lot to contribute.