The mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.
Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.
These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.
Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.
I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.
Here is what appears in the blog posts and elsewhere on Hubaisms.com.
Click on the image to expand it.
Click here to see Part 2 of My Vision in a separate window.
First, persons with dementia can have extremely enjoyable days even though they get tired, cranky, forget stuff, and sometimes act weird unless family and friends help.
Second, mind maps are a really good way to document a special day. [Note: My version of the mind map has family pictures and names which I have omitted from this version.] Click the image to expand its size.
Oh, and yes to enjoy the day I had to take a 90 minute nap in the morning after taking my medications which cause a headache of epic proportions every day in order to sleep through the pain.
Oh, and yes to enjoy the evening I had to take a 2 hour nap in the late afternoon as the game was to be broadcast from 9 pm until 11 pm.
The periodic longish naps have a way of leveling out some of the difficult behaviors that are exacerbated by being tired and even more rigid than usual.
Naps help make it possible to have days of living very well and especially well with dementia.
Most other web sites that rank mind map apps carry advertising from at least several different producers of these programs while I do not. This may or may not explain my greater willingness to differentiate sharply between the apps.
Your idea of what a great mind map app should be may differ from mine resulting in different ratings. Mine are particularly relevant for scientific, health, education, and personal use rather than corporate outline formatting. In fact corporate outline formatting in “mind map” programs does not really produce true mind maps, but most corporate customers do not know the difference. Learn why Buzan-style mind maps will perform far better than the “formatted outline” maps produced by many of the best selling programs before committing to one model or the other.
The programs continuously change (most copy each new version of iMindMap after its release) and my ratings change fairly often.
I communicate with some of the app developers (as well as other independent reviewers) via email. I try not to let these interactions with nice people and arrogant people and people with crummy business models (and crummy customer support) and development geniuses color my ratings.
These ratings apply only to Mac software. I do not use any of these programs on a PC. After 25 years of 40-80 hours of PC use per week, I switched to a real computer and use Macs exclusively.
I will release separate ratings for iPad apps, but in general those programs that are especially good on the Mac tend to be especially good on the iPad. Note that while I do not believe that the Mac version of Inspiration is a particularly good app, I think that the iPad implementation is among the very best.
The apps I review are full commercial versions. I have yet to find a free mind map app that is even close to the best paid apps in quality and usability.
Virtually all of the paid apps have free evaluation periods. Most periods are 30 days which is plenty of time to form your own judgment. Make use of the opportunities provided by the developers and vendors.
And yes, the three programs that I intend to use 90% of the time or more are iMindMap, iMindQ, and iThoughtsX. My use is about 85% iMindMap and 2.5% each of the others. I spread the other 10% of my usage around, often experimenting with other programs just to see if they better fit specific uses or types of users.
This mind map that follows is the same as that above reformatted for “3D” presentation.
I frequently tweet about neurological diseases, sending out links to US government and major foundation web sites. These tweets are among the most retweeted and favorited of those I distribute.
As you may have inferred as you look at the fact sheets distributed, there are commonalities among many of these diseases above and beyond the fact that these are all diseases of the nervous system.
Very few of these diseases have treatments. Most of these diseases are rare and often not detected by primary care physicians or even related specialists like psychiatrists. Medications are frequently used off-label for controlling symptoms like depression, anger, tremor, and many others but these treatments are rarely effective for a long time, if at all, for most patients. Because these are rare diseases and neurological research itself is quite expensive, a small portion of the US medical research budget is spent looking for cures or effective symptom control.
The following mind map shows some of the commonalities among the neurological diseases. Click on the image to expand it.
The next mind map is identical to that above. The formatting has been changed so that you (and I) can judge if an alternate format is more useful for certain audiences.
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.
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.
I use my Mac, and its software, primarily as an aid to thinking about everything from what to buy at the grocery store to how to develop large healthcare systems (after all, nobody working for Secretary Sebelius is doing any thinking so …).
I do not need a word processor or a spreadsheet or a statistical program. Rather I need a thinking environment, a writing environment, and a visualization environment. And a bunch of utilities to enhance the “big programs” that never come with all of the bells and whistles I need.
This is what I like for the computing needs I have. Remember … the computing needs I have.
If I only could choose four of these programs, in order these would be …
This post does not contain medical advice. None of the methods described are known to be therapeutic. What is described are possible note-taking or information-sharing models for patient-client-self management.
For the past few months, I have been focusing on the use of mind maps to assist people with dementia, cognitive impairment, or cognitive decline deal with various issues that arise as they work hard to maintain independence.
You can access those posts simply by using the search box at the bottom of each post with keywords like “dementia” or “cognitive.” Several dozen blog posts will pop up with most very recent.
But the reality is that as dementia or other cognitive problems progress, many patients will require increasing amounts of supervision and care. Mind maps may prove to be useful in assisting a caregiver to help in a more effective, and cost–effective, manner.
Just as those with cognitive decline may be able to remember, plan, express themselves, and document their lives in maps, caregivers may be able to use these techniques themselves to provide better care and client management. Mind maps may potentially help the caregiver recall the preferences of the client, as well as the client’s life history, important events, significant people, and life style
Caregivers may find that visual information recorded in mind maps provides a good way for the caregiver and the client to start discussions.
Caregivers may find that clients can express themselves better with pictures, drawings, doodles than in words.
Caregivers may find that their own notes from each day are more useful if captured in the format of mind maps.
Caregivers may find that mind maps may be used for brainstorming by themselves, with healthcare providers, with family members, and with the client ways to organize daily events, select food and clothing, remember medications, and organize social events.
Caregivers may find it useful to record their own feelings in mind maps as a way of dealing with the emotional and physical stress of caregiving.
The daily calendar — including doctor visits and other appointments and visitors — may be easier to prepare as a mind map and much more useful to the client.
There are dozens of other ways mind maps might be useful in caregiving. I am going to write many posts on this topic in the next months. For now, here are a few examples with many more to come.
Click on each of the images to expand it.
Preparing a Mind Map (with the help of the client or family members) of the Client’s Preferences.
Preparing a Mind Map (with the help of the client or family members) of the Client’s Religious Beliefs.
Preparing a Mind Map (with the help of the client or family members) of Things the Client Especially Enjoys.
Preparing Mind Maps from the Warning Brochure that Comes with Each Prescription Refill.
Preparing a Mind Map of Each Day for Your Use and That of the Client.
Technical notes. The sample mind maps here were all prepared in the computer program iMindMap, which I strongly prefer both for the way it facilitates mapping and the way it typically produces maps that can be very useful. There are alternate programs that can be used, although perhaps not with the same level of good results possible with iMindMap. Because the maps will be used by caregivers and clients, they will tend to be most effective if colorful, “bold,” graphically interesting, and with large typefaces all of which are easily done in iMindMap. Acceptable alternatives to iMindMap would be iThoughts, Inspiration on the iPad (but not on the PC or Mac), MindNode, and XMIND, although each of the alternatives will be more difficult to use to produce maps for clients with cognitive decline than is iMindMap. There are free mind map programs available or free demo versions. This is a case, however, where paid versions are far more cost-effective than the free versions or most free programs. There is a second type of mind mapping program more suitable for business purposes (the major one is MindJet MindManager and also MindDomo and MindMeister) than those caregiving applications discussed here.
The 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.
The links page on websites is dead. Why have boring links that nobody understands on a links page when you can provide links with pictures and context (comments) that are automatically integrated with great formatting and pictures?
These external sites work well and contain my curation work. Both have free versions that probably are within your scope of individual information. All you need to do to integrate these with your blog/website is create the custom graphic for your page and set up a link.
Of the two currently predominant web sites for content curation, I prefer Scoop.it (at least this week) although Pinterest does permit more categorization and also has a great working tools.
Click on the images below to open a new window for each of the external sites.
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.
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.
Since I first posted this 8 hours ago, my colleague Dr Hans Buskes (@hansbuskes) has been sending me various design questions and suggestions. I added a paragraph at the bottom in blue to clarify issues about controlling for mapping style. The addition is about 8 hours after the original post.
Yesterday, I posted on research designs and data and showing the effectiveness of mind maps. Here are some research questions I would like to see answered to “prove” the effectiveness of mind mapping in certain applications and how the degree of effectiveness may be tied to different models of mind mapping. A lot of discussion about the topic was started and continues on twitter.
This is a DRAFT because I would I like to see others add to my list and or make the questions better. Please add any additional research areas or other comments to this list.
I will not be involved in any mind map research myself. So this is not a self-serving list. Feel free to make it your own if you are going to do the work. I would personally accept good quantitative, qualitative, or mixed quantitative-qualitative research/evaluation data and study designs in making a judgment of degree of efficacy.
I am NOT talking about anecdotal or theoretical evidence or that based upon expert judgments. Nor am I talking about “user satisfaction” with various programs or seminars they attend. I AM talking about studies that pass the tests of scientific inquiry AND the “smell test” of reasonableness and relevance AND empirically assess the major outcomes the mind maps are designed to enhance.
If you need to see this list in a mind map format, I may add one later. Or draw one for yourself using your favorite method.
Note: you need not try to answer all of my questions in one study. Study something small if your want. A technique called meta-analysis that will combine the results of numerous studies, small and big, exists.
I invite anyone to answer some of my questions. I believe the methods do-will prove effective AND the research will pass the standards of PEER REVIEWED SCIENTIFIC INQUIRY. Feel free to make me look smart.
Is the best of typology mind maps, in terms of features, theoretical basis, designs that of a) organic Buzan-type; b) linear business-type (Mindjet and others); c) a miscellaneous category of spider-maps, concept maps, and other techniques often used to produce “mind maps?” If not, produce one.
Are each of the types of mind maps effective in producing increases in learning new information, retaining information in long-term memory, sparking creativity in individuals and groups, communicating to groups visually, increasing the effectiveness of verbal communications, allowing individuals to “write” with conceptual trees, providing better understanding of concepts?
Are some of the methods better for some applications while others prove more effective for other types?
Does an extant theory from cognitive psychology/neuroscience explain the results?
How can existing methods be enhanced using information gained in the series of research studies?
Addition: Covariates — In the set of questions above I have not addressed the natural variations in mind maps that occur because of the way that the maps are stylistically designed. Because such design issues tend to be correlated with the content of the map, I would propose handling such issues as covariates within a research design. So, in addition to the questions above we should ask how the answers to the questions above are related to the map’s structure, ordering, colors, visuals, symtax/semantics, size, and content information elaboration. Note that Dr Buskes and I have discussed this for many weeks and that there are a number of posts on both of our blogs about these topics. Because we would be evaluating an intact whole cognitive element (an entire map), it would be important to “control” for such factors as size, color use, etc., at the same time these factors are studied in conjunction with major models as specified above.
Let’s be honest, there is not enough empirical, hard scientific evidence that mind map based learning programs are as effective as there should be. In fact there is FAR less evidence to support efficacy claims about mind mapping than there should be. This has to be fixed.
Before the mind mappers start cursing me out, put this into context — I strongly support mind mapping and think it should be used far more than it is But I cannot find specific studies that strongly support efficacy.
Don’t flip the channel yet … I am now going to give you the most valuable free consulting I have ever provided anyone.
A few studies give people some training into “who knows what” mind mapping and see if they remember or “learn who knows what” better. Creativity is not measured, communication is not measured, long-term efficacy is not measured, training clinical practice efficacy is not measured, and many other aspects of cognitive enhancement claimed are not measured. Still, I believe that mind mapping is useful for most of these things and mind mapping works.
Now “prove” it.
Here is the biggest reason why mind mapping has not been shown to work in anything approaching a “definitive” scientific study or unbiased evaluation — too many things are called “mind mapping” are all lumped together.
A strong research (evaluation) design includes the following factors.
a) Different things called mind mapping are compared. As I see it, there is are three major things called “mind mapping.” The first is Buzan-style organic mind mapping. My bias is to say that this will work best in most (but not all) applications, but I would like to see hard data that my observations are correct. The second style of mind mapping is that embraced by those who use Mindjet aka Mind Manager and comparable programs. Such a style seems to be preferred among business types, and I used Mindjet (formerly known as Mind Manager) for about 15-20 years with many different types of health- and social-care professionals. Then there are dozens of other methods and diagrams called “mind maps,” most of which probably could be called spider maps. I would clump all of these methods together although I do recognize that the category is very heterogeneous.
Addition to original post: Separating these three categories will almost certainly show that the three clusters of methods are not equally effective for all applications. Combining them together dilutes the effects of the first and second methods because the third is probably comprised of a number of less than effective methods.
b) The effects of mind mapping need to be maximized. That is, the participants learning mind mapping or being taught to read existing mind maps need to be trained by experts (and I mean real top-of-the-food-chain mind mapping instructors) in one of the three types of “mind mapping.” The instructor needs to be a “real pro” at this, not a teacher or consultant who has had minimal formal training in mind mapping. Random assignment of participants (subjects) to one of the three mind mapping conditions needs to be made.
c) A lot of before and after variables need to be measured like memory, creativity, ability to learn new materials, ability to increase upon prior knowledge, sophistication of information processing, and all of the other things people claim about mind mapping.
d) Then the data need to be analyzed for enhancements (or not) from mind mapping according in each of the three three dominant models. That is, there needs to be a study of the interactions of learning one of the three mind mapping models from an expert, type of application, and type of effects.
Show me a dozen studies that support mind mapping (with random assignment, large samples, and conducted by a neutral investigator in this highly competitive commercial area) and I will tell everyone it has been proven that mind mapping works for these 10 applications and not these 5 others and what the best kind of mind mind mapping is for achieving certain goals.
Show me even better and more complex studies and I will jump with glee that my own observations have been confirmed.
Or, if it doesn’t work, accept the fact that this is voodoo, a management-education-training fad, or just plain commercial exploitation. (I don’t believe it is any of these things but I also cannot say YET that science unequivocally understands mind mapping.)
You wanna make the big claims, get independent parties to test them in an unbiased way that meets the most rigid scientific-educational standards. The odds are you will be happy you did as will potential users and educator-trainers.
[If you are an education, psychology, neuroscience, or healthcare student there are a lot of good PhD dissertations to be written in this area.]
A few of my examples of using mind maps from around this blog/website.
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.
Irv Oii is known to many international news organizations and researchers as a star data journalist. Being a home worker (although home may be the UK, Ohio, the Middle East, Central Africa, Hong Kong, or Antartica) and a fairly reclusive person, nobody seems to have met Irv. Some speculate that he might be a Jewish Asian-American. Others believe Irv is short for Irvelina, a Russian immigrant physician who went to Ohio (or was it Ojai, California) when the Soviet science programs collapsed and turned into the lower funded Russian collaborative efforts with the EU and USA. The collapse of the Soviet Union resulted in the closing of her laboratory in Minsk. Some even think Irv Oii is an acronym.
Irv is thus an enigma and no pictures of her/him seem to exist. An artist’s conception (mine) based on the writings and consultations of Irv Oii on healthcare breakthroughs is shown below. My belief is that a portrait of Irv should hang over the desk of every data journalist and researcher.