The Face of Dementia is Like a Storm Cloud or a Brick Wall (a Mind Model™)

There are many kinds of dementia, but in many types, one huge change is that you lose partially or fully the ability control your facial expression, body posture, and other physical movements that indicate to another person how you feel, how attentive you are, sudden joy, fear, and especially empathy.

Since my diagnosis of FTD (and several years before that), I have heard statements like these from strangers, friends, and family members. Many people think I am angry, disinterested, or not listening to them.

“You never smile.”

“We’re waiting for you not to frown so we can take the selfie.”

“You don’t care what I think, all you do is look at me with a smirk on your face.”

Well, most of the time I am happy and/or neutral although I am sometimes depressed to varying degrees. I am usually interested in what most people are saying. Sometimes I have to break into conversations multiple times to say that I am confused. That confusion is, for me, more likely to indicate that I cannot decode your words because I am losing language skills, not because I was not paying attention to you. I slouch a lot, I often walk looking directly down because I easily trip over over cracks in the pavement and that sometimes leads to falls (I am currently typing using my left thumb on the spacebar because I broke my right thumb in a fall a month ago).

You cannot judge how I am feeling physically or mentally by looking at me unless you are part of my core family and see me very often and sometimes not even then.

That sucks.

Much of how we feel about people is based on their nonverbal gestures and facial expressions. Somebody like me who can barely smile gives people the impression they don’t like what is being said or are annoyed or distracted.

Most people infer negative things from my posture and face and staring that are simply not true.

This is probably a huge factor in how miscommunications often occur among persons with dementia and those they interact with. Even people who interact with me regularly and know my medical problems often misinterpret me.

The following mind model shows some issues in communicating with persons with dementia and possibly misinterpreting what they are thinking and feeling because they look at you with unintended disinterest, never smile, and look distracted. People have often misinterpreted my attempt to smile as smirking.

And if you are a person with dementia, look at yourself in the mirror or in recent photographs and see if you can make some improvements in facial expressions and posture. And if not, when you talking to people, especially friends and family, remind them that you not in complete control of your facial expressions and that sometimes when you think you are smiling or even grinning, the other person just sees a blank face. You can also make a joke out of the situation.

Click on the mind model image below to expand it.

Don’t Let the #Dementia Monster Feed on Anxiety

Click on the image 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 #Dementia Focus on Hubaisms.com [My Vision, Part 1]

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.

Possible “Hidden” Problems of Persons with Dementia: MindModel™

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.

Click image to expand.

Ideas in Dementia Come at You Like a Runaway Train

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).

Click on the image to expand.

Sketchnotes & Dementia: A Hypothetical Example

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.]

Review of #iMindMap 8.0 [Mac Version]

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.