A phrase you have heard thousands of times (especially if you have lived in California as I did for 30 years). If you have dementia you may groan or the statement may make you angry or you might make a pointed comment back.
Chill, Dudes and Dudettes.
OK, I get it (well actually have gotten it for a number of years since diagnosis). There may not be a 100% good day for you anymore if you have dementia. But how about a perfect (or even good) 20 minutes having coffee with a friend or an hour solving a puzzle with a grandchild or 100 minutes watching Guardians of the Galaxy 2 complete with a refillable tub of popcorn. Yup, these periods of a good day may be followed by a period of frustration or not being able to remember something or difficulty doing a task of daily living.
Use the Force, Luke.
Good moments can be great moments if you let them be. They may last only for few minutes or an afternoon, but given that your brain is “sick” they are a huge gift and blessing. Focus on what is happening to you now, try to not let the bad upset you unduly, and try to enjoy every moment for every second possible.
You may master the Force. You may feel better. Is there a better use of your time?
Focus on what is, not what was.
Click the image of the mind model (mind map) to expand it.
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).
I have been a HUGE fan of the Olympics since I was a very little kid. In 1984 I got to go to the Olympic events in Los Angeles every day for two weeks, on many days with my father. That was the year that the Soviet Union boycotted the games because the USA had boycotted the Moscow Olympics in 1980. Heck, I thought it was great — the USA and East Germany (who came) won all of the gold medals! Months earlier when local pundits in Los Angeles said Los Angelenos were too apathetic to purchase expensive Olympic tickets especially with the Soviets and most of the Eastern Bloc boycotting as it would not be a real sporting event, I had bought as many tickets for the “finals” as I could get my hands on. Later I sold the extra tickets as Los Angeles fell in love with the games. I made so much money that the expensive tickets I had bought for the entire family of 7 that we used ended up were effectively free since the profits covered the cost of the tickets we used. Street enterprise at its best. My tickets became worth more because the Soviets didn’t come as all Americans became Olympic fans the year we won all the golds.
Winning the race to live well with dementia is like running the 10K race at the Olympics. Everybody has to pace themselves at the beginning so that they can learn about their opponents. In the final stages of the race they speed up and sprint their fasted the last 200 meters.
A mind model of the dementia race strategy is shown below. Click the image to expand it.
I think I am winning my race to live life to its fullest while having dementia. I’m getting ready to claim that gold medal. You can win your race too. Think about what you are doing and strategize like a 10K runner. Learn all you can in the beginning and then speed up later as your new knowledge kicks in.
I expect to be adding a lot of posts about (or using) sketchnotes in the next few months to Hubaisms.com. Here is how to find the existing ones and the ones I will add. The information as a sketchnote. Click on the images to expand them.
Apathy is often identified as a key symptom used for diagnostic and other purposes with dementia. Apathy seems to be most often discussed for those types of dementia-causing conditions often associated with young onset.
I believe it is possible to differentiate four types of states that are identified as “apathy.” This differentiation is quite important both for the administration of drugs and behavioral exercises to fight apathy and for planning social interactions and outings for the person with dementia if you are a #caregiver or a #family member.
The following mind map shows and explains four types of apathy that I would differentiate. Click on the diagram to expand it.
Type 1 is what I would call “observer identified apathy.” Caregivers, friends, doctors, and others see an individual who does not smile or seem to react to a positive environment and assume that the person is not experiencing emotion and would like to repeat the experiences often or see the same people again. These observations may have a quite different meanings for different individuals and in fact not represent apathy. For instance, I have little control of my non-verbal expressions (face muscle control and feedback is going, going, gone) and even though I feel happy and engaged you will rarely see a smile and when I try to “force one” for the iPhones, I usually end up making a rather bizarre expression. At social gatherings I often stand by myself just watching. I am neither apathetic nor a “stalker,” rather I often disengage in large groups because I can not selectively attend to individuals or the noise is too much for me to understand what is being said. I am trying to control incoming stimuli not to ignore them. On the fringes or in a quieter space with a small group of individuals I can appear quite engaged.
Try not to over-generalize when looking at a person with dementia and assuming that they are experiencing apathy. Something quite the opposite may be happening. And I may not be ignoring you because I feel apathy or do not like you. You may simply be standing in a noisy, chaotic part of the room.
Type 2 is what I would call “true” or “experienced apathy.” The person with dementia experiences the classic symptoms.
Type 3 apathy is mislabelled depression. Many of the symptoms of depression are also indicators of apathy but the underlying causes of the behaviors may be quite different for apathy and depression. It is important to determine if the person with dementia is actually experiencing depression rather than apathy (or both) as there are medicines available that seem to be able to help control symptoms of depression.
Type 4 apathy is what I would call “deliberate apathy.” When you see me ignoring situations you find enjoyable or engaging or demanding an emotional responsible, it may be assumed that I am experiencing apathy. I might tell you that you are right, I am, but it is because I chose to for this situation. At some point as dementia progresses one may need to make decisions about which activities and people and situations are the most important and should receive as much of the rapidly dwindling supply of mental energy as possible and which should be ignored so that energy can be conserved. These are deliberate decisions that people with dementia may need to make and then adopt as part of their lifestyle. My social circle is smaller because I have had to make choices about where to direct my energy and my “ignoring” someone is not a statement of disliking or lack of concern but rather that I think my family needs my time and energy more than they do. Things I used to think were fun are ones that I may ignore or avoid now not because I fail to think that they are fun but because I have decided that other things are more fun or enjoyable for other reasons and I should invest my limited time and energy into those.
Note that several or all of these types of apathy experience may be going on in a person with dementia at the same time. It is much more complicated than it looks.
Since the beginning of this blog in 2012, I have consistently — with each new version — concluded (from dozens of comparisons with other programs) that iMindMap is the single best program for developing mind maps. Period.
With version 8.0, iMindMap is no longer the world’s best mind mapping program. Rather, it is the world’s best mind mapping program PLUS additional features that make it the world’s best visual thinking environment (or VITHEN using my coined term). Period.
What makes iMindMap 8.0 so valuable as an overall mind mapping and visual thinking tool is that it encourages you to use iterative, hierarchical, nonlinear, big-picture, creative ways of generating ideas, communicating those ideas, and integrating the ideas with the data of images and statistics. There is no tool I know of that is better for these overall tasks and the building of creative models.
I use iMindMap between 3 and 10 hours per day on the Mac, iPad, and iPhone 6 Plus.
Version 8 exceeds Version 7 in that the program has been significantly speeded up both for computer processing and in general usability of all of its advanced formatting features. The increased speed with which advanced formatting can be done encourages more precise and creative visual thinking.
Did I mention it has a very good (becoming excellent) 3 dimensional display mode and provides a much better presentation tool than the PowerPoint standard? The new Brainstorming Mode (file cards on a corkboard metaphor) allows those who like to see words rather than images to brainstorm in the mode most natural to them. I’ll never use the mode but I project many will embrace it.
The iMindMap program has been the best tool I have had to allow me deal with a neurocognitive neurodegenerative disorder and continue to be productive over the past five years. The program permits me to think at a very high level which I cannot do nearly as well with other techniques or other mind mapping programs.
All seven maps shown here are identical except for their format.
[I intentionally did not use any clipart because I did not want distract from the basic creative thinking and model development-presentation functions of iMindMap that are the real core of the program. With any of the variations of this map, if you spend 10 minutes adding selected included clipart or icons, the map will be even more visual.]
The remainder of my review is — appropriately — presented as a mind map.
Click images to expand.
Three styles provided with the iMindMap program.
4 Custom Styles I Use in My Own Work and 4 Variations on the Same 3D Mind Map
I think that a lot needs to be done to make the web sites of various dementia advocacy groups and non-profit organizations more friendly to those that have dementia. A lot more.
The sites are too busy, too dense, and the big picture is not always clear in the structure of the sites and the flow from page-to-page.
It is very disempowering to have web sites about dementia that are not maximally useful to people living with neurodegeneration and dementia.
Living independently or semi-independently with cognitive impairment and early stage dementia is an admirable goal. Remember, however, that there are many cautions and possible problems that you, your caretaker, your family, and your doctors need to be aware of and monitor.
Plan to discuss these (and other) issues with your doctors and others on a regular basis. It is an important part of trying to stay as independent as possible.
Part 1 of this series of posts can be accessed in a separate window by clicking here.
Art therapy is fairly well established as a non-medical intervention that can be made for those living with dementia in order to improve certain aspects of quality of life.
My hypothesis is that if individuals with dementia or other levels of cognitive impairment can be taught to use (and possibly create) ORGANIC mind maps, it is likely that the patient will receive more than just the benefits of standard art therapy. Major cognitive refinements from mind mapping such as maximizing creativity, memory processes, organization, and visual thinking can be added “on top of” the creation of one’s own drawings or paintings. At one level, mind mapping is disciplined and expansive creation of art. It is likely that at least some of those living with cognitive impairment can use the visual thinking tools offered by Buzan-style ORGANIC mind mapping to improve their optimism and creativity and other aspects of quality of life.
You might want to consider acquiring visual thinking skills before you have the onset of possible cognitive impairment as you age.
Click on the mind map image to expand.
To understand the mind map better from the clinical experiences of the patient, family, and healthcare providers, you may wish to …
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.
Just seeing this set of pictures and the brief comments will probably elicit a large number associations and feelings you have about each of these public figures. The pictures make the associations strong and emotional.
I also expect that today’s Boomer Generation will have a very broad range of reactions to these stimuli for extracting memories. I certainly find the memories flooding back as I look at this map.
I believe that picture mind maps are very powerful tools for helping people recall memories from throughout their lives. Many maps of this type might be quite useful to those experiencing cognitive impairment or early-mid stages of dementia. The pictures can be associated with many events in a lifetime, most of which have nothing at all to do with the president’s smoking behaviors. [And yup, in addition to claiming “I did not have sex with that woman,” Bill also claimed he did not inhale [marijuana].)
Hans Buskes and Philippe Packu in their recent book on mind mapping raise the issue of the best fonts to use in mind maps for clarity and usefulness.
I tend to agree with their suggestions BUT ONLY when the mind map is developed for general communication to large groups of people with whom the mind map developer probably has little direct connection. This is the typical situation for mind maps shown in books written by “mind mapping experts” for general groups of readers. It is the typical situation in management consulting and professional presentations.
BUT …
my notes are for me; your notes are for you
my to do list is for me; your to do list is for you
my personal feelings are for me
my life history is for me and my family
my social history is for me and my friends
my creative work is best done with small groups of peers, friends, and colleagues who communicate with one another in a relaxed and informal way
Makes you wonder whether developing mind maps with “standard business” fonts such as Georgia or Tahoma or Arial or Times Roman is an especially effective way to make maps primarily for your own use, especially if you have any types of cognitive impairment or special cognitive needs.
I am much more motivated to work on maps and refer to them and plan from them and keep my schedule in a mind map if the fonts in the mind maps do not look like I have urgent BUSINESS PRESENTATIONS to make.
I like to kick back and use a large number of different professionally developed “hand-printed” fonts which I often match to the topics/content of the map and whatever gets the creative juices going.
You can see lots of examples of using fonts to inspire creativity in the variations among the mind maps presented in the posts in this blog.
Now, let’s generalize these concerns to people with various kinds of cognitive and perceptual impairments (mild cognitive impairment or MCI, early-stage dementia, later stages of dementia, typical aging, learning disabilities, and illness).
Someone with mild cognitive impairment developing a mind map to help in planning an event or making a decision or scheduling may find it much easier, productive, and creative to work with mind maps in various unique fonts appropriate for the topic, the individual’s preferences, or for novelty rather the usual “readable” business fonts. Many no longer work or ever had the opportunity to work among those who develop “management” presentations. “Personal” fonts in mind maps and other visual thinking methods may make them more effective as planning, thinking, and memory tools, especially for those with cognitive impairment.
Of course this is my conjecture based on my own preferences and knowledge of some of the relevant literature on neurodegenerative diseases. To the best of my knowledge no studies have ever proven what the best fonts are for mind maps for different types of people with different types of uses for maps on different days of the week in the winter or summer or even when the moon is full.
To push my creativity, I want my maps to look hand-printed and personal and not like a business presentation or a doctoral dissertation.
Now at the extreme you could always use one of the free services on the Internet for developing your own personal font(s) based on your own printing or cursive writing! I tried. The results are below.
I personally intend to stay with commercially developed hand-printed fonts by pros and try to pass those off as “my own” handwriting. I am sure that I can read their “handwriting” a lot better than my own.
Here are links to some earlier posts about events, people, reactions, and other information you might wish to document as you age so that you (or a caregiver or younger family member) will have the information later. Each of these posts illustrates combining text and images. These examples are ones that can be done by you before you have any cognitive problems as a self history as well as with a caregiver after problems occur. Any whether you ever need to use to help you if there is a cognitive decline, these are great ways of passing down information from generation. I wish I knew much of this information about my parents and other family members. Click on links to see examples.
