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

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People with Dementia who blog, write, speak at events for healthcare providers and caregivers, or tweet can be a powerful force for improving public and professional understanding of dementia.

While I was trained as a psychologist and other bloggers with dementia also have advanced healthcare degrees and experience (@KateSwaffer of Australia comes immediately to mind), many truly excellent bloggers talking about their own experience have little experience in healthcare, social care, or research.

Personally, I wish that there was someone who would look over my blog posts to ensure that they medically accurate, use the names of pharmaceuticals and diagnoses correctly in accordance with current terminology, and reflect mainstream positions.

If some advanced medical students, advanced psychology and social work graduate students, advanced practice nursing students, and others were available to quickly review short blog posts, the information going from people with dementia to others (including both other people with dementia, healthcare providers, and caregivers) could be greatly improved.

Rewriting is not needed. Simple fact checking is. Blog posts are usually short, and probably some simple fact checking could be done in five minutes or less. And yes, a waiver should be signed so no volunteer can be sued.

A suggestion. I do not have the energy to make this work, nor the appropriate expertise. I would love to see someone take this on as a project.

George

HOW  ADVANCED STUDENTS  CAN HELP GREATLY  IMPROVE BLOGS OF  PEOPLE WITH DEMENTIA

On Sunday afternoons the local “news” station — largely affiliated with University of North Carolina news and sports and editorials by the community of know-it-all PhDs with too much time on their hands — has a radio show hosted by two physicians from the UNC health care system interviewing other doctors on the radio about current research and public policy.

So last week the topic was head injuries and football and low-and-behold the three doctors all agreed that the findings from the studies are clear and horrible.

So then they started in about what they should tell parents in response to all of the questions about whether children should be allowed to play tackle football as youngsters (as young as 6-8) and later in their lives. All admitted that they did not know what they would tell their own young sons when they wanted to play. All admitted they were big football fans and acknowledged the hypocrisy in enjoying sports that cause devastating brain injuries.

Duh.

To the people playing doctors on the radio (and in their jobs) I ask what part of the following is confusing to you?

The research is clear.

If you play football at any level you have a significant chance of suffering a brain injury that could destroy your life.

If you do not play football you will not have a brain injury from football. [Stay away from hockey and soccer “headers” as well.]

While you are at it … Please oh please tell me what the great rewards from football are so I can understand why children, teens, college students, and adults should be exposed to the horrible consequences of brain trauma.

Brain injuries from football are 100% preventable. Aren’t doctors always the first to say we need to prevent diseases and conditions before they happen?

Don’t play football.

If the doctors of our esteemed medical school affiliated health care program cannot figure this one out (for their own children and their patients), it’s time to send these folks back to third-grade for remedial education.

Don’t play football.

AND, don’t let your kids play football.

Oh, in case you wonder … I have dementia. It sucks. It’s pretty life changing.

Do the former NFL players experience the same thing? Well, a lot of them come to UNC for services (the NFL has a publicly-announced contract with UNC for studies and clinical services) and I share a physical therapist with some and a secondary consulting neurologist with some. Since they see the same health care providers I do, I assume that their problems are similar to mine.

Don’t play football.

brains  are  too precious  to destroy

As of today this blog has almost 500 posts. Since I usually employ mind maps to make major points, there are considerably more than 1500 on the site and the number is growing very rapidly.

If you see an interesting post (or mind map) when you follow a link to the site, use the search button on the site to find related posts.

Keywords which will turn up dozens of posts include #caregiver, #dementia, #cognitiveimpairment, #mentalhealth, #neurodegenerative, #neurological, #psychology, #neuroscience, #HIV, #drugabuse, #socialjustice, #disenfranchised, and dozens of others.

The search box is located near the links to my book on Amazon and iBookstore on the left margin of each page.

Also note that the book, released in early 2015, has a number of mind maps and issues which are not discussed on the web site including long justifications of why I think the mind mapping methods I propose will work well for many (although not everyone) as a means of improving quality of life.

There is a lot more on the site and in the book than just what is in my past dozen posts.

Please explore my ideas with the search box on the site. Oh … and of course please buy the book.

Thanks,

George

And … I am glad to report that the wizard, bandaid man, Frank, geek boy, the sage, superboy, R2D2, the turtle who won the race, and my dog Sabra all agree with me. Donald Trump does not.


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6 Geek Boy - Two Thumbs Up 2

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Financial elder abuse is the most frequent form of elder abuse and is often performed by paid caregivers, unscrupulous family members, Internet fraud, and every assorted of type of low-life scum known.

Who you think answers those emails suggesting you give them a bank check for $50,000 so that you can receive $40,000,000 from the estate of an unknown ancestor in Africa or South America or Eastern Europe? Yup you got it, elders isolated in homes, with or without dementia.

What are the some of the scams? Lottery tickets, inheritances, REVERSE mortgages, REFINANCED mortgages, help to a family member to pay for emergencies and education, help to a “friendly” caregiver or neighbor or stranger who provides social contact, and just about everything else. Many elders do not recognize how much property value they own in that house they bought 35 years ago in a lower middle class neighborhood that is now fully paid for and in the middle of a trendy and upper class neighborhood.

Here are some issues family members need to pay attention to so that the assets of an elderly family member — especially one with dementia — do not disappear. And sadly, many families also need to “watch each other” by having full disclosure to one another and the person with dementia about assets are being spent.

Free help is available from a number of institutions.

In many US states, healthcare providers, bankers, social service agencies, emergency medical technicians, all levels of the criminal justice system workers, credit card issuers and others are “mandated” (by law) reporters of SUSPECTED elder abuse. Talk to the mandated reporters — especially members of law enforcement or the Department of Adult Protective Services — if financial abuse or any other form of elder abuse is suspected. If reports are made, law enforcement is mandated to investigate and reporters’ identies are protected.

It’s sad to have to raise these issues, but better informed (and saddened) than sorry.

Click on the mind map to expand it.

2Suggestions for  Dementia Family  Caregivers  About Protecting  Money and  Related Resources  of People with Dementia

Suggestions for Dementia Family Caregivers About Protecting Money and Related Resources of People with Dementia

 

DGS_Robots-12

See your doctor if you have concerns about your health, cognitive functioning, psychological state, or other problems.

See your doctor a regular physical examination at the times and ages your doctor recommends.

The only advice I give is to see an appropriate professional IN PERSON if you have problems. Do not rely on information on the Internet from anyone, especially me. A licensed professional can typically only diagnose and treat someone seen in person.

If you have concerns about the payment of your doctor, talk to the receptionist or an appropriate person in the doctor’s office about what insurance that doctor will accept. Most take almost all but confirm this BEFORE you go. You can always ask about copays and the cost of treatment services. Your doctor may not be able to tell you this to the penny — after all, the follow-up tests and treatments you need are not completely known at the beginning — but she or he can make an estimate and refer you to appropriate public funding programs if payment for care will be a huge burden for you.

In case you missed the 500+ times I have said this …

this is NOT 2015

Watching your memories, thoughts, skills, experiences, friendships, profession, and most importantly your family relationships and independence disappear during dementia is something that is excruciating to experience. There are some things you can try to slow the process or at least make it more bearable. Here are some suggestions that work for me.

I do not know whether my strategies will work for you. Every case of dementia is different just as every person is different.

I do know that cost of trying the strategies that work for me is less than $1.50 per day. And I doubt that there are any other downsides to trying other than losing the cost of 40% of a coffee house drink per day.

If you choose to try my strategies, you may be able to lessen the pain of watching the onion peel. Or try something else. But do be aware that these changes are happening and make your caregivers and doctors aware that it they are happening to you.

Suggestions. Click the image to expand it.

STOP  PEELING  THE ONION  OF DEMENTIA

FOUR TYPES  OF APATHY  IN DEMENTIA

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.

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.

LIFE ISDGS_Monsters-13

REPETITION OF QUESTIONS

You are a Saint for dealing with this. Every day. All day.

If the person under your care has problems understanding and asks the same question over-and-over, consider using a tool like a mind map or other visual representation for the answer. It can be reassuring for a person with dementia to have a pretty picture to stare at to get an answer..

And it might work part of the time.

My post early this week about how my doodling style had changed over several years of cognitive impairment and dementia was very popular.

I am currently working on a very detailed analysis of how my mind mapping style has changed as my cognitive processes have shifted. I see some large evidence of visual learning, change, and possibly brain plasticity in shifting to visual processing.

I will start the formal posts later this week (and there will be a bunch).

Click on any image to expand it.

“The times they are a’changin”

For now, consider these maps from late 2012 …

FIG 1A Final Seven Reasons Some Healthcare-Socialcare Systems Achieve Better Outcomes Fig 2 Final  United States Presidents TIMELINE

early 2014

george huba the summary MIND MAPS final 360 INPUT FOR PROGRAM EVALUATION

late 2014

3Life with Dementia Cautions and Warnings choices For those with COGNITIVE IMPAIRMENT or EARLY dementia

and mid 2015

Don't Be A Jerk Simple Mind Map Topics for Engaging a Person with Dementia I LIKE TO TRASH TALK Huba's Favorite Rock Band of All Time ALTERNATIVES TO MIND MAPPING FOR THOSE WITH COGNITIVE IMPAIRMENT OR DEMENTIA Learn These Skills BEFORE You Have Cognitive Decline GH stand-off

Most people carry around a lot of assumptions about what other people should be able to do.

We typically assume that if you can write a blog post you can tie your shoes or feed yourself ice cream.

Or that if you cannot remember names or understand a simple conversation you cannot mind map. Or that if you can mind map you must obviously be able to make a decision about what clothes to pack for a two night trip.

Well … I can do a pretty complicated — and I think fairly creative — mind map in an hour or two that illustrates a pretty good conceptual understanding of scientific, psychological, or emotional material. I takes me two FULL days of high anxiety to pack a suitcase for a short trip and I often arrive with clothing unsuited for the intent of the trip or the weather. I remember a lot of multivariate statistics and probably could still analyze a complicated BIG DATA set, but have had times when I had to do Google searches to spell arithmetic correctly.

Doesn’t make any sense except to a skilled neurologist. And every person with dementia is different and every disease that results in dementia is different. And sometimes you can do things in the mornings that you cannot do later in the day.

Don’t let your perceptions and assumptions stereotype people with dementia. We can — depending upon the specific person — do a lot of things you believe we cannot do because we leave a shirt buttoned and pull it on over the head since buttons are too frustrating. And just because I can make a mind map does not mean I can button my shirt or make it clear to a server what I want for lunch.

Go figure.

I can however remember how to eat ice cream with a spoon. And I am pretty sure I will never lose that knowledge. But I am writing complete instructions for myself just in case I cannot figure it out in the future. Some things are too important to leave to chance.

Click on the image to expand it.

DO NOT ASSUME

[A response to this post is reported here.]

As I have commented before, I often find myself spontaneously throughout the day to relieve anxiety and make myself focus better. I have gotten into the habit of scanning these spontaneous doodles before they get lost.

This mind map shows some of my conclusions about how my doodles are changing. COLORS are MUCH BRIGHTER. Repetitive patterns are everywhere. Bolder.

In my judgment — and this is pure speculation on my part — it seems that information I am thinking about is better coded because my brain is simultaneously working on patterns and colors and sequences. Perhaps the simultaneous doodle pictures and thoughts get paired and pushed into areas of the brain that are not as damaged as other parts.

NOTE: YOU CANNOT DIAGNOSE DEMENTIA FROM DOODLES. DON’T BE STUPID. IF YOU HAVE ANY CONCERNS GO SEE A MEDICAL DOCTOR.

NOTE: DOODLING IS NOT THERAPY-TREATMENT FOR DEMENTIA NOR ANYTHING ELSE. DON’T BE STUPID. IF YOU NEED TREATMENT GO SEE A MEDICAL DOCTOR.

Click on the image to expand it.

CHANGING DOODLES AS DEMENTIA PROGRESSES

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My theory (or perhaps more accurately, current speculation or WAG) is that one of the reasons that mind mapping may be helpful to those with cognitive impairment or dementia, mental illness, and other cognitive-behavioral disorders is that mind mapping engages those part of the brain that are also accessed through existing methods of art therapy or the experience of art.

I am going to start posting a series of “mind map art” models I am developing. In these new mind maps, I have tried to optimize some of the artistic elements of the map using the program iMindMap, my personal favorite on a Mac.

Here is small piece of #MindMapArt. Just a little experiment not good enough post at the local shopping mall. But meaningful to me because I am trying to express something important to me while living with dementia.

Click image to expand.

mind map  art from  the heart  01