social, health, political imagery through the lens of George J Huba PhD © 2012-2017

Search results for dementia

A few years ago I set out — as I have discussed in this blog many times — to “prove” that a person with dementia can use mind mapping in numerous ways to improve quality of life.

Yes a big “clinical trial” is the right way to make such a test. But I had no resources to run a clinical trial and even more importantly, no time and energy. And I mean time defined as “productive, predicted remaining life span.”

But I did have a willing participant with dementia (me) and a huge audience on social media. It is now about 4 1/2 years since I first posted a mind map on my blog site. The blog site now contains more than 1,000 mind maps and more than 700 posts.

Through my blog posts and their observations, usefulness to others, and my medical path, I’ve demonstrated that the technique can by used at least for one person on this planet daily and with results shown on the Internet for all to see.

No one should assume that because I believe that the method has proven effective for me that it will be effective for them. You should consult your own health care providers if you wish to try this for yourself or a person under your care.

There are many, many, many examples of the use of the methods on the blog site. What’s you excuse for not spending an hour reviewing them? My methods are useful with my dementia, but most also apply — with a few adaptations — to many other physical and mental diseases.

Click on the image below to expand it.


Mind modeling (advanced mind mapping) is a method of drawing out ideas so as to facilitate thinking.

I think that mind modeling works well for some people with early and middle stages of dementia. And I think that most people from 6-60 can master this method of visual thinking and memory retention before the onset of cognitive impairment and dementia.

Here is a brief visual summary of this visual method. Click on the image to expand it.


I have frontotemporal dementia. Over years I have not responded well or appropriately when receiving gifts.

So I thought it would be a good idea to put together a mind model of things you might want to consider when purchasing a holiday or birthday gift for a loved one living with dementia.

Here are three mind models (mind maps) on the gift giving process when the recipient is living with dementia or cognitive impairment.

For each of the images, click on it to expand.

The first diagram shows a set of practical considerations you should think about when selecting a gift.


The second diagram is a list of possible gifts that might also help both the person with dementia and the caregiver. Most of these suggestions are relatively inexpensive.


The third diagram shows the primary consideration in gift giving for persons with dementia.


Each of these mind models is derived from my own experience as well as my training in psychology. The models are merely ones that apply to myself and may not fit your situation. Hopefully, though, even if the models do not fit your loved one, these mind maps will get you thinking that a somewhat different approach to gift giving might be appropriate at this time.

My suggestions are focused toward gifts that might help the person with dementia and the caregiver deal with some of the symptoms of the disease.

Do realize that with certain types of dementia, there is a significant possibility that the person with dementia will not respond well to the gift. In that case suggest that you can return it, but don’t rush to do so as the longer reaction after a couple of days may be very favorable.

Happy Holidays and special occasions to all.


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 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

Click on the image to expand it.


Click here to see Part 2 of My Vision in a separate window.


I set up the Facebook group Dementia Mind Maps for those who may be interested in using mind maps to aid in dementia care, research, education, prevention, and general information.

If you would like to discuss the topic with persons with dementia, adults aging typically, healthcare professionals, decision makers, the general public, educator, mind mappers, and the curious lifelong learners, please join the group.

The group is an open one.

This is the link for joining the group.



Not the past, not what might happen in the future. Fuzzy, intuitive, today’s emotions. Nonlinear, visual, big picture. Attention flows toward good, bright, happy visualizations.



Opening your mind to nonlinear thinking may provide cognitive reserve that helps you as cognitive functions start to decline perhaps precipitously into dementia. Neuroplasticity is a mechanism that the brain will uses to reassign functional processing from one area to the brain as it is damaged by trauma or disease.

One very good way to encourage the development of cognitive reserve and neuroplasticity is to practice nonlinear thinking methods that can help promote mindful solutions. Should the brain become damaged, it may be able to use nonlinear, symbolic visual thinking to cope, at least for a while. And while you practice you may also experience strength in your resolve and understanding.

Do note that the above comments are speculative. There is NO formal research on mind mapping nor other comments about this in the literature (other than my own). Also this is based only on my own experience and generalizations from my earlier research on daydreaming and imagery. So do not go about thinking that this proven. Rather it is speculative.

While I theorize that mind mapping is related to mindfulness in SOME applications, even if it turns out that it is not — from the results of formal empirical studies — there are other demonstrated benefits from mind mapping, so the actual use of mind mapping should still be encouraged.

This mind model (aka mind map) below shows a “Circle of Care” for persons successfully living well with dementia. The ability to access such a network when needed is a goal that the healthcare and social care systems should strive to attain.

While this may appear to be a daunting task, remember that most of these services exist in some form in most places but in most instances are not coordinated nor aware of the contributions of other sources. The key to making the “system work” is successful (care or case management) of the individual.

Click on the image to expand it.




You aren’t getting any younger. Someday you might find that having nicely formatted, engrossing, memory-enhancing, motivational pages of notes to look at and remember your life is a godsend.

Mind modeling (mapping)!!!

You are not getting any younger. You may face later cognitive decline and dementia.

Do a little work now to have a contingency plan if cognitive impairment becomes part of your daily routine, as it has for me.

Get mapping!!!!!

If you do not know to read a mind map, look at this first one. Start at #1 on the map. If you are comfortable with reading mind maps you can skip this refresher.


Click on the following mind model (map) to increase it size.


I’m 65, and my neurodegenerative disease is continuing to get worse.

But today is Halloween, one of the great children’s holidays, and one I love. I made up a mind map this morning to help dredge up some of my memories I have of Halloween since I first started participating in the annual ritual of collecting chocolate bars around 1956.

I don’t recall as much as I did last year about this time in my life although I do recall a lot as I go through the memory retrieval exercise needed for an autobiographical mind map. Had I made this map a year ago I would have greater access to my memories now. Had the map been made 15 years ago before the memory damage symptoms became significant, I probably could have written down very much I loved about the holiday.

The basic point is simple. If you anticipate neurocognitive problems (or have them now) you can increase your enjoyment of the future by recording (in a list, a mind model/map, a video, pictures and captions) your memories and feeling about Halloween past and future. It does not take long, does not cost much, and you probably will want it even if you do not have significant memory loss and dementia but rather just have typical aging memory issues.

In my opinion, mind maps are the best way to document your life using visual thinking methods. There are many other ways. Pick one that works for you.


Click on the mind model/map below to expand it.



In many cases a person with dementia expresses herself with what she believes to be a very logical thought pattern that appears to a caregiver to be quite illogical. But if a person with dementia is expressing himself in a consistent but bizarre way, it might very much be indicative of a logic which — while unintelligible or not able to be decoded by a caregiver — has a consistency and repeatability that means that a person is communicating in a personally meaningful way.

A few thoughts in a mind model (AKA mind map) created by my own demented brain. The process of mind modeling is for me an alternate way of thinking and communicating that later permits me to translate the ideas and my (but possibly not your) logical network into words you might understand.

Please click on the image to expand it.




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.


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.





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 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.





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.]



There are many ways to greatly dementia care that are very inexpensive. Web sites need to be brought to higher standards for their materials, and the sites need to be more friendly to persons with dementia and caregivers. More support groups are needed: there are almost none for people with non-Alzheimer’s dementia. This whole blog is about using visual thinking methods for streamlining dementia care. Some may find the suggestion that clergy and their religious congregations can provide huge amounts of help is controversial. I do not think so as many persons with dementia and their caregivers turn to spiritual leaders for counseling in times of medical and interpersonal crisis. Clergy need to have access to the most recent information available on dementia to share and explain along with referrals to agencies and professionals who may also provide information and social services. Dementia-friendly religious services for those with dementia are rarely, if ever, provided. Special religious services tailored to ensure the age, medical, and cognitive disabilities of some congregation could be provided on weekday afternoons.

I note that most of the ideas I have suggested are currently being implemented in various locations. We need to make these methods globally available. And we need to greatly increase the quality, quantity, and usability of information available to those who want to provide dementia care services.

These ideas are very inexpensive to implement, and in most case largely consist of assisting those already work hard on these issues.

A mind model (aka mind map) is shown below. Click on the image to expand it.


Ways to Improve Dementia Care Very Inexpensively


I believe that you can deal best with dementia when you identify activities that make you happy when you do them by yourself. Nobody entertaining you or telling you what to do. Nobody helping you. Nobody protecting you from “failure.”

This is my list of 21 things I do along that make me happy. My list will not be your list, nor should it be. My own list changes frequently as I vary the things I do often.

The list has one big theme to it. Just as you did before you had dementia, do as many enjoyable activities that you can manage by yourself. No burden on others to entertain you; they have their own lives.

A mind model (AKA mind map) is shown below. Click on the image to expand it.

I left point 21 out of the original mind model — in my defense I think that many of my points summed to this — so I wanted to correct the model. Here is a better list (it is the same as the old map with the addition of point 21.


Final Map – Click to Expand

21 Things I Can Do By Myself that Make Me Happiest as I Deal with Dementia Daily


Original Map – Click to Expand

20 Things I Can Do By Myself that Make Me Happiest as I Deal with Dementia Daily


A good adaptation to dementia — current or imminent — is to learn how to TRY to pick up the pieces.

Trying is a great way of refocusing life. Succeeding, at a task tiny or huge, is a major accomplishment. Give it a try. You may feel better. MUCH BETTER …  just for trying to do a hard thing.

Something beautiful may result.

A mind model. Click on the image to expand.

Resilience in  Dementia



Stop it with the doom and gloom. After finding out that you have dementia, there is usually many years of life left. Are you going to devote it to I Love Lucy reruns or keeping active and enjoying life.

The mind model shown below does NOT recommended activities, therapy, or life strategies. Things do change when you have dementia and you should not make any changes in diet, exercise levels, financial procedures, and most other things without consulting your doctor, your family, and others who might be expert. This is very important because part of your dementia might be having poor judgment in many areas.

The figure is a mind model (AKA mind map) with some ideas that you might consider as you plan for having a full and enjoyable life, even while having to deal with some new things because of the condition. With a little help from your doctors, family, and friends you can get by, and YES, get by in a very good way.

dementia does not mean you have to give up many things you like

The songs of Joe Cocker often inspire me to stop feeling sorry for myself and get by with a little help from my friends, even if dementia sometimes causes me to sing a little off key.

joe1 joe2 joe3


And in case you forgot, the song was written by Lennon and McCarthy and here is the original sung by Ringo.

In 2010, I was diagnosed with one of the variants of FTD (PSP) in part because I came into the neurology department after a very serious fall coming out of a UNC stadium (fortunately, 100 feet from the UNC Hospital Emergency Room).  Later as my gait stabilized, it became clear that the diagnosis of behavioral variant FTD would be a better one for me as the behavioral and decision making symptoms of FTD had occurred (initially, in the years before diagnosis after the fall).

I do have some significant issues with my short term memory, especially of verbal materials (I remember faces but not names), but these are not my primary symptom as memory loss would be if I had young onset Alzheimer’s disease rather than young onset FTD. I have about 500 posts on this blogging specifying what mind mapping (or my more sophisticated variant, mind modeling) does for me. I usually talk about how it helps my decision making and learning of new things, but the natural tendency is to speak of mind mapping as a memory maintenance and enhancement method, which of course it also is. Mind mapping is also extremely useful for understanding patterns of your own behavior and focus on positive reactions to others rather than negative ones.

Here are some of the disorders that make up Frontotemporal Dementia (Disease). All involve a loss of decision making, planning, and judgment (Executive Function). For some the initial symptoms are a personality change while others start by having language problems understanding or producing language. Eventually most people with FTD (FTLD) have all three sets of symptoms. The other diseases (PSP, CBD, FTD with Parkinsonism, FTD with ALS) have initial symptoms of motor-mobility difficulties followed later by the behavioral and language problems.

Mind mapping may be so effective for use with dementia (and specifically FTD) because it is a good way to plan and make decisions, and promote judgment. It forces you to make associations between words and pictures which helps both in producing words and understanding information provided as a mind map better than a written document or verbal instructions.

And it is fun and feels artistic.

A mind model explaining some of these connections is shown below. As a reminder, I only contend that this method works for me. It may or may not work for you and should you choose to try this you should remember that I am only discussing my own observations of me.

Please click on the image to expand it.

Types of Frontotemporal DiseaseDementia and Artistic Mind Modeling as Cognitive-Behavioral Assistance






When I was a kid we used to go over to my grandfather’s house to watch the Wizard of Oz the one time they aired it each year (the Sunday after Thanksgiving). My grandfather had the first color TV in the family and Wizard was one of the few movies shown in color on TVs in the 1960. In the generation of an LCD TV in every room, and iPad on every lap, and 50 iPhones playing movies on every flight, the kids of today definitely do not relate to the kind of experience it was once a year for 15 family members to sit in the living room with popcorn and my grandfather’s homemade root beer. I sort of recall (perhaps erroneously) that it was the first color movie my mother and my aunts had seen as kids and it seemed that they knew every line (and especially song). In those simple times, they had to have the actor who played the evil witch do coffee commercials so that kids could see that the witch was an actor, not real.

Those of my generation learned some lessons from the Wizard of Oz movie and Dorothy, Toto, the Tinman, the Cowardly Lion, and the Scarecrow. Using some of those less can help live well with dementia. Or any other time you are not in Kansas.

Think of the memories a mind map with a heavy visual component from an older person’s childhood (for example movies like the Wizard of Oz, Star Wars, ET; TV shows like Star Trek, the Brady Bunch, Lost in Space) might bring back through associations.

A mind model (AKA mind map). Click on the image to expand it.



I have dementia. Frozen Brain is one of the worst things I have to deal with. No, you have not heard this term before as I made it up; technically, it is a loss of executive functioning.

But it feels like my brain is FROZEN and no amount of oiling the squeaky gears is going to get it moving in time to make a good decision.

A mind model (AKA mind map) is shown below. Click to expand the image.

2frozen brain, dementia, and total mental exhaustion





Part 1 of this series can be accessed in a new window by clicking here. Frontotemporal Dementia — often associated with young onset as compared to Alzheimer’s disease and its late onset — has been shown to a potential relationship to artistic creativity among those who have the neurodegenerative condition.

I see my own work on this blog as an attempt to combine artistic impulses with information to potentially help myself and others with dementia.

Click on the image to expand it.

The  Long  Hawaiian  Shirt  Journey


Clip art used under license.



Nomenclature: FTD is an acronym for Frontotemporal Dementia, the most common form of young onset (before age 65) dementia.

Mind modeling is an advanced form of mind mapping.

Part 2 of this series can be opened in a new window  by clicking here.

If I had to use one newspaper article of general interest to describe my fascination with mind mapping while I have frontotemporal dementia, I would select one that appeared in the New York Times in 2008. Interestingly the article appeared while I was in the beginning or middle stages of FTD but before diagnosis.

You can open that article in a new window by clicking the image below.


Here is another article that recently appeared in the Wall Street Journal. I literally just read this article for the first time this morning while doing final editing of this post. I say that this was funny to me because I have started wearing old Hawaiian shirts from vacations to the islands of Hawaii I made in the 1990s and 2000s. [There is a reference in this article by EJ Sternberg MD to a man who with FTD who wore Hawaiian shirts every day.] I do note that I wash the shirts after wearing them one time and that it is in the 90s all summer in North Carolina. Click the image to open the article and learn about Hawaiian shirts, art, and frontotemporal dementia.


There are a number of similar articles on the Internet.

While I have only rarely (as an example of what you could do) set out to create a mind map that was “Art” (with a capital A), I think many of my thousands of mind maps in this blog can be viewed (as incredibly boring and elementary or interesting and mind capturing) “art” (with a lower case a).

I create mind maps as a way to organize thoughts, manage my life, communicate with others, and document the course of my neurodegenerative condition and methods of coping with it. As art, not really, but I greatly enjoy merging colors and shapes and especially fonts with information and VISUAL THINKING. But over five years, I have gotten pretty good (at least in my estimation) in applying the colors and designs and elements of paintings into my computer-assisted mind maps. As my conception of a traditional Buzan-style mind map has evolved significantly, I have also entered another plane of combining information with elements of art to express my conclusions better and worked out a theory of mind modeling that expanded the concept of the mind map. This blog has more than 750 posts and several thousand mind models/maps ALL created since I have had diagnosed with FTLD (formerly as the PSP variant and then as FTD).

You can access my concept of the MIND MODEL by clicking the link. More important for an INDEX of my mind model theoretical writings, click this second link The results open in a new window.

Based on my experience — and my experience ONLY — I wonder if my use of organic mind models (AKA mind maps) with professional experience, observations, data, and my conclusions show how artistic impulses can be combined with mind models as a communication method during various stages of FTD.

Below are some examples of my recent mind models (AKA mind maps). Art is in the eye of the beholder and I hope you have a benevolent eye. Clicking on any of the images will expand its size.

The process of my mind models is described throughout this blog. In simple summary, it takes me 1-2 hours to create one of these mind models (now). When I walk away from the computer I often forget what map I am working on and an hour of two after posting it on my blog I have no idea what my most recent posts were and I have to go to the web site and look at the index. However, when I open a post and look at the map for even a minute or two, I can immediately recover my logic for creating it.

Yeah, it baffles me too even after 35 years of practice as a psychologist doing research on altered states of consciousness (drug abuse and its treatment), imagery and daydreaming, elder abuse and dementia, aging and nursing models, mental illness, neuropsychological testing, and evaluating healthcare and social care.

During this same period of neurodegenerative disease I have become a rudimentary sketch noter, doodler, and sketcher who spends several hours a day “playing” with pens and pencils and more recently watercolor inks and an assortment of typing papers and artist sketch pads. Am I any good at that stuff. NO. But, it does help organize my life and plan and remember. Most importantly, it makes me feel calmer and happy.

Click on the images to expand them.

What Does Living Well with Dementia Mean

Trust Findings from [Peer-Reviewed] Health Professional Meetings I Can Sell You Idaho or California.

Mind Model vs Organic-Style Mind Map

Persons with Dementia and Family Caregivers Partnership and Reciprocal Relationship

Adult Coloring Books & Imaginative Drawing & Doodling & MindModeling & Aging

To Live Well with Dementia You Need to Commit to Being a Life-Long Learner


And I typically make between 10-50 like doodles like the following examples daily, often while watching TV or sitting in my bright kitchen looking out the window. It helps soothe the savage beast! And, I am especially obsessed with color shades.

flag - 1






A lot of things that used to be simple may be difficult for you now, depending upon when you learned them and which skills are required.

If you cannot do some task you or a caregiver thinks is simple, you might be able to relearn it IN A DIFFERENT WAY. The trick is to be able to control yourself and not start doing the task the way that now always fails. Rather you need to identify a different way to perform the task — IF POSSIBLE — and then learn to do that by practicing until it gets to be natural. The Internet is a great source of suggestions. And you should never be embarrassed that you have to do something in an unusual way like eating soft vegetables (peas and lima beans and lots of others) with a spoon or holding a pencil in a different way so you can write faster or bigger. Or taping instructions (with pictures) on the refrigerator or clothes dryer. Or asking Alexa (Amazon Echo) or Siri (Apple devices) to look up information like “what is the weather today” or “what is the news today” or “play music by the Tedeschi-Trucks band.”

It takes me a long time now to look up weather on the Internet. It takes me 10 seconds to ask Alexa or Siri to look it up and read it to me. I use a spoon to eat those sneaky peas instead of not eating my vegetables. I now handle laser printer paper differently (much more slowly) because I got lots of nasty paper cuts handling it in the old fast way.

My list of tasks I needed to unlearn and relearn will not be your list. But the principle is the same. Before you give up eating peas, think about another solution or find one on the Internet or invent one. Practice so it becomes natural.

A mind model (AKA mind map) is shown below. Click the image to expand it.

Dementia Strategy Unlearn & Relearn


Blue And White Super Girl - Two Thumbs Up

This post is about the hardest part of dementia for me to deal with. I present my ideas as a mind model (a simpler version of mind model is the mind map). Mind models (and maps) help me greatly in dealing with various parts of the dementia complex.

I have a type of dementia for which severe memory dysfunction does not appear until late in the course of the underlying frontotemporal lobar degeneration (FTLD). The earlier symptoms are personality change and decline in executive function.

By far, from my experience, the defining part of my neurocognitive disorder (dementia) is the experience of disrupted executive functioning. I often cannot decide what to wear, whether I want to go to a group dinner or not, what color ink to put in my fountain pens, how to efficiently schedule my time, how to prioritize what is most important, and other related tasks. I often cannot definitely evaluate information for its validity, importance, and veracity. This is especially true on new day-to-day tasks rather than professional information which I largely accumulated much earlier life.

Most of the highly developed skills I have great difficulty with are ones that tend to be associated with the behaviors and cognitions that allowed me to run a company, make professional decisions, develop long-term strategic plans, evaluate people and programs, and function creatively.

Not being able to at least perform executive functions at least moderately well can drive me nuts as performing them superbly was a huge part of my professional identity. Given that there is no current way of healing the brain and restoring these functions to their original level of effectiveness, the only alternative way to cope with these is to use alternate methods to make decisions, plan, evaluate, analyze.

I can deal with the fact that I may not remember your name temporarily if you are a family member and permanently if I met you yesterday. A good coping strategy is to simply ask the person their name. Another is to have information stored in various forms (pictures, lists, concert tickets, mind maps) so that you can recall information.

Executive functioning is a different matter. There are no established assistive methods for helping deal with the partial loss of executive function. So I have been experimenting and discussions of the results have become more than 400 of the 650 posts in this blog since 2012. So far as I know, my work is the only systematic attempt to supplement damaged executive functioning with alternate methods of manipulating information.

Here is a mind model (AKA mind map) about how a damaged set of executive functions makes me feel and some strategies — discussed in MUCH more detail elsewhere in this blog — that help ME. I feel a lot better when I use the tools I suggest and I believe I think much better too. Were it not for these alternate methods this blog would not have been possible nor many of my other projects.

I will however still face the “what to wear” and “which ink to put in my fountain pen” decisions tomorrow morning. But even partial control makes me feel calmer, more in tune, more my former self, and more productive.

I cannot guarantee that any methods I use will work for you or the person for whom you may give care. Many empirical studies are needed to test efficacy for large groups of people. I do believe they work for me, and I know that they are inexpensive. These tools are not treatment (your brain is not going to change) but rather potential assistive devices like a cane or handrails in the bathtub or a dog for emotional support. Trying some of what I do may be a good suggestion for you. I do not know if the methods will work but I do know that the methods are in most cases very inexpensive often requiring just a pencil or pen and some paper (the eco-aware can use the backs of enveloped).

A mind model of what is hardest for me to deal with in dementia and how I try. Please click on the image to expand it.



Old Elf In Blue - Two Thumbs Up