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

Search results for dementia

I have been living with dementia since formal diagnosis in 2010 [and the reality that it started a number of years before that].

Objectively, there is no cure for the neurodegenerative condition I have and generally progression constant.

Subjectively I feel much better now than I did when I was diagnosed.

Over the years, I learned much from other persons living with dementia who live WELL. A number of them write about their experiences in blogs and in groups on Facebook.

I’ve tried to integrate the observations and successes with my training in psychology and practice over 35 years.

I feel better now than I did six years ago. I have medications that do not cure but do help control the symptoms I found most troublesome. I reprioritized my life and focus my energy on those activities most important to me, my family, and others. Even when others cannot fully understand why I do certain things, I take solace in the fact that I have concluded that there is a higher power in the universe and that it is my responsibility to try to understand her and convey what I believe I understand to others.

Click on the image below to see some of the ways I believe one can redirect feelings of anger and despair into living well with dementia and minimize the stress on family and friends.

Feeling Better with Dementia [After Six Years of Learning How]

I love mornings. I wake up with the rush of energy and clarity.

Mid-day, ugh. By 6 PM (dinner) things can be dismal if I did not take a NAP in the afternoon. The most useful naps seem to be those take after lunch.

Evenings can be mundane or great. Certainly not as bad as the afternoons. I need to be careful that I do not stay up too late. If I do, tomorrow afternoon could be worse.

These are MY daily rhythms. They may not be yours (or those of the person in your care). But do watch and see if the time of the day tends to relate to moods and concentration levels and creativity and social skills. When mine get bad, I try to take a nap.

Click on the mind map to expand it.

and here is a “fancier” version (content is identical).

 

Since 2012, this blog has tried to help persons with dementia and their caregivers learn to use mind maps and other visual thinking tools to simplify the journey through dementia and lessen some of the burdens placed upon caregivers and persons with dementia.

Mind mapping and other visual thinking tools are ways of representing ideas and communicating through pictures and diagrams. In addition to mind maps, other useful visual thinking tools are sketchnotes, doodles, diagrams, and photography.

I focus on mind maps because that is what I primarily use, but sketchnotes and other ways of representing information are also good.

Note that while I use computer programs, you can draw any of these diagrams with a piece of typing paper (if this is not big enough for you, tape a few pieces together), a pencil or pen, and a little care to print legibly. It is best to use a few colored pencils to make the diagram a little clearer but not necessary.

The important part of the diagrams is the organization and the words (ideas) you express.

The mind map below shows some of the people who might benefit from your diagrams including the person with dementia and YOU. Mind maps are a very powerful way of presenting information to others and organizing and remembering your thoughts.

Caregiver Prepares Mind Maps for ...

Virtually any kind of information can be presented in a diagram. Here are some examples. As you collect such information you can make it available to others.

Persons with dementia benefit from knowing their schedules and what is coming up. It cuts anxiety. Doctors can absorb information from you rapidly, in context, and accurately. My internist and neurologist like to see them. Family members will like to see what is going on, and this is a way to manage and increase their own involvement in care. Mind maps about what the person with dementia likes and behaves can make your job an easier one for others to assume so that you can have some well-needed respite. Care notes can help everyone know what has been going on for the person with dementia.

Whether these notes are made by a family caregiver and loved one or made by a paid caregiver, they can be invaluable both for maintaining the quality of care and informing others the best ways they can help

Click on the image to expand it.

Potential Uses of Mind Maps by Caregivers of a Person with MiddleLater Stage Dementia

My dementia is starting to get to the point where I have a lot of trouble remembering how to spell a lot of words. I am also having increasing difficulty writing a sentence that uses the rules of grammar correctly (not that I was ever really proficient in grammar but once upon a time I wasn’t this bad).

I have been trying the program Grammarly which is a grammar and spelling checker far more sophisticated than anything inside any word processing program (notably Microsoft Word and Apple Pages) that I have used. It also can be used with your blog, Twitter and other social media posts, and lots of other programs on the Mac or PC.

Highly recommended.

To use Grammarly you must be logged into the Internet. It is also fairly necessary to have a subscription instead of using the trial, free version. Subscriptions are about $12.50 per month depending on how you pay (monthly, quarterly, annually). I think it is well worth it for me. Hopefully, the program will help me trick you into believing that I am maintaining spelling and grammar levels even as I know they are fading without the computer assist.

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The bulk of the posts in this blog document my experiences using mind mapping (and more generally, visual thinking) as a way to deal with my own dementia. My own history of using these techniques is briefly summarized HERE.

Since I starting using mind maps for this purpose in 2010, my use of the mapping techniques has shifted somewhat. More and more I use the mapping methods for helping remember to take medications (and more importantly to avoid double doses if I forget that I have already taken the red pill).

Here are some of the ways I am most often using mind maps in 2017 as my dementia progresses. Please click the image to expand it.

my-most-frequent-uses-of-mind-models-in-middlelater-stage-dementia

The most important of these uses are the creative ones given in the branch at the bottom labeled “creative.” These uses are the ones that keep me interested and feeling like my contributions can be meaningful each day.

 

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 the 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 www.Hubaisms.com 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 to — with a few adaptations — many other physical and mental diseases.

Click on the image below to expand it.

i-mind-map-because-2017

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.

mind-modeling-with-dementia

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.

considerations-in-purchasing-gifts-for-persons-with-dementia

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.

holiday-gifts-for-that-hard-to-please-person-with-dementia

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

remember-this-when-purchasing-gifts-for-a-person-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.

dont-let-the-dementia-monster-feed-on-anxiety

 

still-crazy-after-all-these-years

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.

why-i-developed-the-hubaisms-com-focus-on-dementia

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

still-crazy-after-all-these-years

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.

living-well-with-dementia-circle-of-care

information-you-should-have-in-mind-models-aka-mind-maps-as-you-age

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.

 

mind-mapping-mind-modeling-may-promote-mindfulness

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.

living-well-with-dementia-circle-of-care

 

 

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.

stop-read

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

information-you-should-have-in-mind-models-aka-mind-maps-as-you-age

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.

stop-read

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

memories-of-halloween

 

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.

dementia-caregiving-101-1-1-3-while-4-1-3-the-logic-is-there-and-consistent-its-just-not-the-worlds-logic

 

papersphinx_monkeys_07

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.

some-hidden-problems-among-persons-with-dementia

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.
ideas-in-dementia-come-at-you-like-a-runaway-train

 

 

Blockheads-23

 

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.

race-2-bigger

 

3d-race

 

Blockheads-23

 

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.

 

sk-pg-1

 

sk-page-2

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.]

 

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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.

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Final Map – Click to Expand

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

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Original Map – Click to Expand

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

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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

 

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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.