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

a #mindmap

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.

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.

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.

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 …

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.

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 …

early 2014

late 2014

and mid 2015

Get with the program.

At the end, it all comes down to accepting “that was then, this is now.”

And yes, everyone has the strength to do it to some degree.

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.

[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.

September is Alzheimer’s (and Other Dementias) Awareness Month

1. TELL your elected official to GYST.
2. GMST for Alzheimer’s and Other Dementias. Raise Awareness. Raise Cash. ESPECIALLY Raise Cash.

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.