Let’s face reality. Very few people will come out of the pandemic enjoying good mental health. And over many years many will recover only partially.
It’s been a difficult time for most of us.
The diagram shows some of the things we have all been exposed to since late 2019. One key central issue is that most of us are not experienced with dealing with these issues. Stay inside your house for two years? Be unable to attend the funeral of a family member? Go to a friend’s house for dinner? Thanksgiving?
As we re-establish healthy lifestyles after the pandemic, it is quite important that shift many of our treatment and public health resources from COVID hospitalization into mental health services.
Get vaccinated. Your risk of getting Covid-19 is going way up if you are unvaccinated. If you do not have access to vaccine, wear a mask, stay six feet away from others, stay out of crowds, and wash your hands.
Variant Delta (D or the Indian variant also well-established in the UK) is the most severe of all variants to date, and is becoming the dominant version of Covid-19 in many countries. Many public health professionals predict that within a few months Variant Delta will the dominant strain globally and in the USA, much as it is currently dominant in India and the UK..
If you want to see the most current information about Covid-19, Variant Delta, search with Google or an alternative search engine. As I write this on June 19, 2021, there is a huge amount of news stories available. CNN has had good coverage on Variant Delta.
Current information is that Variant Delta is the most problematic and deadly Covid-19 variant yet.
For those of you who think that the term Dementia Monster is insensitive, do remember that I have one who lives inside of me. Increase my anxiety levels and out he comes. I spend much of my energy trying to limit his ability to feed on the anxiety.
The mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.
Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.
These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.
Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.
I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.
Here is what appears in the blog posts and elsewhere on Hubaisms.com.
Click on the image to expand it.
Click here to see Part 2 of My Vision in a separate window.
One way that healthcare communication can be made more effective is to supplement or replace traditional pages of small-type textual information with graphic displays such as mind models (AKA mind maps), sketches, graphs, and infographics.
This post focuses on mind models (mind maps). The same general arguments would apply to sketches, graphics, infographics, and other visual information methods designed to promote a more effective patient-oriented healthcare system with more complete, accurate, and easy-to-understand information for all.
If you are not familiar with mind models (mind maps), you should look at the mind map at the bottom of the page first (Footnote).
There are many problems that can plague a person with dementia. Some of these are easily detected but others may be “hidden” because of the nature of the major symptoms of the disease or “hidden” because the person with dementia (or caregiver or in some cases family members) is trying to hide some of the problems from outside observers.
For instance physical, psychological, or financial abuse will be hidden by the abuser and perhaps the person with dementia. Memory loss may make it difficult for the person with dementia to accurately report accidents.
It is important that healthcare providers, caregivers, and family members be trained to identify the hidden problems.
To some degree or another, it is likely that most persons with dementia have some of these hidden problems. For instance, I bump against things all day long, usually because I am rushing around or not paying attention because I am trying to multitask. When asked by a family member or friend where the bruise came from, I have to try to reconstruct where the accident must have happened by thinking through a lot of alternatives for a bruise half-way between my ankle and knee.
A mind model (aka mind map) on the way that ideas hit you when you have dementia.
In a group, the need to say something immediately before you forget it often takes a backseat to etiquette rules of waiting for your turn to say something and not interrupting. If you are talking to someone with dementia, consider cutting them slack and letting them jump in when they can. If the group won’t let the person with dementia break in it can lead to both a sense of frustration for all and quite frankly, the loss of some good ideas and interactions.
The current rules of etiquette do not take account of the fact that some of the participants in an interaction will have severe cognitive impairment or mental illness that pretty means that if a thought is not expressed immediately it will be forgotten.
Sometimes rules need to be stretched or curved (like a railway track) and patience exercised. This is one of those times.
f I am trying to blurt out an idea to you, believe me that if I don’t say it immediately it is going down the track far, far away from me. And it may not come back for another five minutes (if at all).
I have been a HUGE fan of the Olympics since I was a very little kid. In 1984 I got to go to the Olympic events in Los Angeles every day for two weeks, on many days with my father. That was the year that the Soviet Union boycotted the games because the USA had boycotted the Moscow Olympics in 1980. Heck, I thought it was great — the USA and East Germany (who came) won all of the gold medals! Months earlier when local pundits in Los Angeles said Los Angelenos were too apathetic to purchase expensive Olympic tickets especially with the Soviets and most of the Eastern Bloc boycotting as it would not be a real sporting event, I had bought as many tickets for the “finals” as I could get my hands on. Later I sold the extra tickets as Los Angeles fell in love with the games. I made so much money that the expensive tickets I had bought for the entire family of 7 that we used ended up were effectively free since the profits covered the cost of the tickets we used. Street enterprise at its best. My tickets became worth more because the Soviets didn’t come as all Americans became Olympic fans the year we won all the golds.
Winning the race to live well with dementia is like running the 10K race at the Olympics. Everybody has to pace themselves at the beginning so that they can learn about their opponents. In the final stages of the race they speed up and sprint their fasted the last 200 meters.
A mind model of the dementia race strategy is shown below. Click the image to expand it.
I think I am winning my race to live life to its fullest while having dementia. I’m getting ready to claim that gold medal. You can win your race too. Think about what you are doing and strategize like a 10K runner. Learn all you can in the beginning and then speed up later as your new knowledge kicks in.
Click on image to expand. Estimated time to develop for a NOVICE (me) = 15 minutes. The sketchnote was drawn by a person with dementia (me).
[Note. I usually write/draw note panels like this from right to left in sections because I am left-handed and it minimizes the amount of smeared ink. There is no magic in this, so use any organization that works for you.]
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.
What can u do with $5/day/Person with Dementia 2 improve lives. My ideas at https://t.co/mfTktKUWId. Where r yours? Let's pool ideas.
There are 5 basic choices, although more than 1 option could be executed simultaneously. For instance, one well-recognized American wanna-be POTUS would use options 1 and 2. One liberal blogger would combine Choice 5 (most important) with Choice 4.
Click on the image to expand it.
In the long run, Choice 5 will work best. Choice 4 eventually needs to be done no matter which other choices are made. Choices 1-3 are merely band-aids at best, and demagoguery during an election year in the worse case.
Have dementia? So do I. You and I and others can use Twitter responsibly to provide information and observations and comments to millions of others, any one of whom might use that information to make a difference in treatment systems, the development of pharmaceuticals, priorities for the use of tax dollars, or the care of a family member.
Pssstttt… these techniques are for anyone advocating for just about any social issue. Pick a good topic you know something about and become a One Person Advocacy Organization.
Living with dementia is all about improving quality of life (QOL). Treatments to fix up your brain are still in development. They will not happen in my lifetime. But, as I always suggest in this blog, there are some ways of using simple cognitive and behavioral methods that may make your life (and that of your family) more pleasant. When you have dementia, a better day is priceless.
There are several products on the Apple app store for iPhones and iPads that claim to promote electronic communications among patients, family members, and paid caregivers. In reviewing many, I found them — as a group — to be somewhat expensive and typically fairly difficult to use (by me, a member of the patient target group with a PhD and 25+ years of software development experience).
I have carried an iPhone and iPad with me almost continually for the past 10 years. I have always considered the voice control app Siri to be something of a “bar toy” that you can ask questions like “who won the 1923 World Series?” or “what is the dollar-euro exchange rate?” My judgment had been drawn based on the earliest versions of Siri that had significant problems in voice recognition and returned “interesting if bizarre” information in response to questions.
Then recently I watched a teen sit with her iPhone and take notes, schedule, get smart answers, and generally zip through her homework. She did not seem to be doing anything “special” to enable the phone to interpret her voice. And she got terrific and accurate translation of her spoken words into written words using Siri.
Well … I decided it was time to start acting “cool” and flexible again and seem like I was having a conversation with my friend Siri. I started to talk to Siri and “her/him/it” and tell it to take written notes. I experimented with several Apple devices and found that multiple individuals (and devices) linked on the same account can easily share notes.
Free. Nothing special required. Easy. Doing a little research, I concluded that the transcription and note taking function now work far better than ever before due to enhancements in Siri, but more importantly because of recent upgrades in the Notes app included in iOS.
There is huge potential here for Persons with Dementia to take notes for themselves easily and simply by speaking into an iPhone they carry everywhere. And for caregivers and family members to leave notes for a Person with Dementia. Or to check the PWD’s notes to see what is going on. No lost notes and I bet that many people are likely to carry their phone everywhere than to carry a pencil and notepad.
If you and Mom (or Dad or your aging friends) carry iPhones, you can easily set up a system where notes can be shared in a couple of minutes.
Comments: 1. Apple is reliably rumored to be releasing Siri for the Mac in June 2016. 2. At this time I only recommend sharing notes, not calendars. Calendars are confusing. 3. Siri also runs on the Apple Watch. Hopefully well enough to also share notes. 4. Donald Trump is reportedly suing to change the name Siri because he does not want Syrians in the US (OK, so I couldn’t resist).
The mind map below organizes the basic information about this system and provides additional details.
The slide presentation breaks the mind map into pieces. It will run automatically or you can push the pause button and then use the arrow keys to move through the presentation manually.
Siri, take a note. Get started making electronic notes with Siri many times per day.
You can change voices for Siri [male/female and in the US Version Americanish, UKish, or Australish] easily. I prefer the female British voice (the American female version is too common, the Australian female version is too upbeat and hard to follow, and I do not want a male butler or a bossy service representative voice). Mary Poppins is quite helpful, friendly, and at times scolds you. I need a nanny.
By the way, ask Siri to take a note and say this word. It will spell it correctly.
If you use Siri, you can also find out the answer to the “argument” (discussion) you having with your caregiver about how much money Lionel Messi makes in dollars, euros, pounds, or yen.
Sorry folks. I do not use PCs anymore after 30 years of frustration and bugs or Android devices so if you do not use Apple products you are going to need to explore this area on your own.
Since the beginning of this blog in 2012, I have consistently — with each new version — concluded (from dozens of comparisons with other programs) that iMindMap is the single best program for developing mind maps. Period.
With version 8.0, iMindMap is no longer the world’s best mind mapping program. Rather, it is the world’s best mind mapping program PLUS additional features that make it the world’s best visual thinking environment (or VITHEN using my coined term). Period.
What makes iMindMap 8.0 so valuable as an overall mind mapping and visual thinking tool is that it encourages you to use iterative, hierarchical, nonlinear, big-picture, creative ways of generating ideas, communicating those ideas, and integrating the ideas with the data of images and statistics. There is no tool I know of that is better for these overall tasks and the building of creative models.
I use iMindMap between 3 and 10 hours per day on the Mac, iPad, and iPhone 6 Plus.
Version 8 exceeds Version 7 in that the program has been significantly speeded up both for computer processing and in general usability of all of its advanced formatting features. The increased speed with which advanced formatting can be done encourages more precise and creative visual thinking.
Did I mention it has a very good (becoming excellent) 3 dimensional display mode and provides a much better presentation tool than the PowerPoint standard? The new Brainstorming Mode (file cards on a corkboard metaphor) allows those who like to see words rather than images to brainstorm in the mode most natural to them. I’ll never use the mode but I project many will embrace it.
The iMindMap program has been the best tool I have had to allow me deal with a neurocognitive neurodegenerative disorder and continue to be productive over the past five years. The program permits me to think at a very high level which I cannot do nearly as well with other techniques or other mind mapping programs.
All seven maps shown here are identical except for their format.
[I intentionally did not use any clipart because I did not want distract from the basic creative thinking and model development-presentation functions of iMindMap that are the real core of the program. With any of the variations of this map, if you spend 10 minutes adding selected included clipart or icons, the map will be even more visual.]
The remainder of my review is — appropriately — presented as a mind map.
Click images to expand.
Three styles provided with the iMindMap program.
4 Custom Styles I Use in My Own Work and 4 Variations on the Same 3D Mind Map
In general, mind mapping programs do not export their maps to other formats or seem to export it in a way that seems unnecessarily difficult and at a great loss of the work that went into developing the map in the initial program.
I have never heard this said so bluntly, but let that not stop me from stating the real issues here.
For companies to refuse to promote interoperability of mind maps among their programs (or heaven forbid to develop a common standard file type for mind mapping) makes an assumption that is directly insulting to the user.
That assumption is that you no longer own the rights to your own mind map — specifically to move the ideas easily from program to program — once the map has been worked on in a specific program.
Fortunately Microsoft and Apple got past this nonsense by using easily converted file types that do not lose features between Word and Pages as well as Excel and Numbers. Most other companies make good translations among word processing, spreadsheet, and presentation programs.
I move files between word processing programs all of the time because it is easier to do specific types of formatting in some than others. Frequently I compose in one program in Markup and bring it into the “high feature programs” for creating camera-ready copy. That is my right. I paid for all copies of the programs I use and the text and earlier formatting is my intellectual property.
If you really think you have the best mind mapping program, the best way to prove it is make it easy to import files from another program AND to make easy to export files. After all, if your program is the best users will quickly find that if they move files in from another program they have much better mind maps. Similarly, if your program is the best users will quickly find that if they move files from your programs the minds are not as good.
The principles are quite simple.
I own the content of my mind map.
I own the cumulative formatting I have done on my mind map whether done in one program or many different ones consecutively.
As a customer I find it offensive that you try to limit my ability to make consecutive formatting changes in different programs by having limited or no exporting of my formatting or by not properly interpreting the formatting done in another program.
This is capitalism at the expense of the customer’s right to change products mid-stream because each has different features the user would like to combine. So long as I pay for legal copies of all the software I use, I should be able to combine the use of any with that of any other program while retaining the work I have already done in another program.
When I started this blog at the end of 2012, one of the first mind maps I presented my values in a coherent way. Of course two years have passed, values evolve, and mind map programs get better as do my skills in using them. When I look back on it, I find it pretty surprising that I was able to put several hundred personally meaningful mind maps on my blog site in only two years. I think that the way that mind maps engaged me over the past two years and (in my humble opinion) allowed me to explore creatively many issues points to the great value of the method of visual thinking.
Here is return visit to a slightly revised, prettier mind map created from that first published two years ago.
Living independently or semi-independently with cognitive impairment and early stage dementia is an admirable goal. Remember, however, that there are many cautions and possible problems that you, your caretaker, your family, and your doctors need to be aware of and monitor.
Plan to discuss these (and other) issues with your doctors and others on a regular basis. It is an important part of trying to stay as independent as possible.
The majority of the posts on this blog are about using visual thinking methods — of which I think that by far the best is #Buzan-style organic mind mapping — to understand, explain, evaluate, and communicate about healthcare. A lot of my own thinking has focused on using visual thinking techniques to potentially improve the quality of life of those with cognitive impairment and dementia.
Tony Buzan and Chris Griffiths and their colleagues and staff at ThinkBuzan have done a very comprehensive job at getting many of Buzan’s ideas embedded into a general purpose computer program (iMindMap) which provides a general visual thinking environment, of which mind mapping is a special part. There are many computer assisted mind mapping programs, but I have concluded that iMindMap is by far the best for creative visual thinking and communication, in no small part because it fully incorporates Buzan’s theory and theoretical implementation.
Like scientists and management consultants and educators and healthcare providers and patients and patient caregivers and students and many others, illustrators struggle with how to best use visual representations to support better thinking and communications.
Which brings up this beautifully conceived and executed little book that I have found to be mind expanding and liberating in how to develop and use a series of illustration techniques and “tricks” to look at things differently when trying to make creative breakthroughs.
Whitney Sherman is the author of the book “Playing with Sketches” which provides 50 exercises which collectively will change the way you think about creating images to understand and communicate ideas.While Ms. Sherman wrote the book for designers and artists, the techniques will be just as useful for visual thinkers in science, education, medicine, industry, and other fields. The beauty of Ms Sherman’s exercises is that in showing you fairly simple ways to make hugely informative and well designed images, the tools will themselves suggest many applications to visual thinkers of all types.
And, I have found that Ms. Sherman’s techniques can be used by the severely artistically challenged (of which I am one); the techniques are ones for Visual THINKERS, not necessarily artists and designers.
I have mentioned this book before in much less detail, but in the months I have used the methods, I have found that they WORK very well to facilitate creative visual thinking. For me they have promoted a breakthrough in how I see the visual thinking canvas.
Get the book, try some of the techniques (pick a random one here and there to start), discover that great artistic talent or aptitude is not required, and see how the techniques fit the information you study in search for better healthcare or disease prevention or decision making or facilitating creative group processes.
In partnership with Tony Buzan’s techniques for organic #mindmapping and Mike Rohde’s framework for #sketchnoting, the techniques codified by Whitney Sherman provide very powerful visual thinking tools.
I will be posting some examples of using the sketching techniques of Ms. Sherman to developing assistance and communication techniques for those with cognitive impairment or early-mid stages of dementia.
This is an old story often repeated as it was typed every few hours by telegraph operators in the 1800s to test the lines. And, everyone learned to type it. The story (sentence) of course was used because it contains every letter of the English language.
[My repeated attempts to come up with a short, single sentence that is hip, cool, trendy, and oh so 21st Century, and contains all 26 letters of the English alphabet has been a failure as of this date. I am working on it.]
At any rate, everyone knows that “The quick brown fox jumps over the lazy dog.”
But, do you know the background research?
The same “research notes” presented in summary or full form can present a sentence or a short story.
[OK, so it wasn’t really a Newfie. However my lazy, sleeping, snoring dog has been practicing for the part for years, so I let her have it. And yes — really, truly — I have had both foxes and coyotes in the front yard of my current house. I guess I could also have said that the fox was rabid (most are) but that would have changed the rating to PG-13.]
This mind map is an enhanced version of a mind map I first published about a year ago. As is well recognized in the literature and discussed previously on this web site, individuals experience the progression of dementia in a number of ways depending upon the specific underlying disease or condition that causes the dementia symptoms to appear, existing psychological resilience factors independent of the neurological issues, and one’s psychological and physical resources.
You CANNOT diagnose yourself as having cognitive decline, cognitive impairment, or dementia from the information in the mind map. People without neurological OR psychological illness, problems, and issues may experience these feelings.
The map does provide an overview of some of the feelings and views that individuals whose cognitive health is declining may feel.
Etiquette in the Era of High Levels of Adult Cognitive Impairment and Ubiquitous Mobile Tablets
A little role playing exercise.
What is going on? The person (with dementia) sitting opposite you at the restaurant just pulled out an iPad and connected to the Internet. Is it rude or something else? Perhaps that person is using the iPad to look up information on the Internet (or iPad)? As technology progresses and behavior interventions are introduced for cognitive impairment, that is not an unlikely possibility.
Now, put yourself in the shoes of the person with cognitive impairment. Why might you want to consult your tablet or smartphone? How would you feel? How would your dinner companion see you. Rude? Shouldn’t. You are very very smart.
Oh, and real life, I am the guy with the dementia and iPad. Even when you do not need it, it is quite reassuring that it is there. I don’t leave home without it.