I have personally worked in or designed and led several large service initiatives including those on HIV/AIDS, drug and alcohol abuse, PTSD, domestic violence, minority services, and preventing transmission of HIV from a mother to her infant at the time of birth.

The first thing you do in public efforts to provide accessible, sensitive, appropriate, valid, needed, and culturally competent research and services is to add consumers of those services to your Advisory Board. Yes they might be quarrelsome at times and not understand all of the (usually trivial and inane) fine points of research and government regulations, but most professionals agree that adding consumers of the potential services and research is quite important in developing excellent services. Many also believe that the time of individuals who are consumers of the services studied should be paid at the same rate as the usual suspects (advocates, academics, and other self-important participants).

The American Academy of Neurology and the American Psychiatric Association are currently taking public comments on a process in which they developed draft consensus measures of Dementia Quality. Looking over the list of those who participated in the process I see no representatives of people with dementia.

Idiocy. And damn it, I think that I have a professional background, a proven research and healthcare record, and status as a Hall of Fame measurement psychologist that equals or exceeds that of the listed participating representatives. I also have dementia and write about dementia services. I personally am not looking for work — this blog keeps me as busy as I can be — but it is important to note that I could easily identify a half dozen other professionals with my level of expertise who also have a dementia-syndrome disease. So far as I can tell, none of the dementia-related public initiatives is including representatives of the people living with a dementia-syndrome disease.

My point is quite simple. Dementia research, services, and public policies can be made much better by including people living with a dementia-syndrome disease or condition. And it is not that hard to find highly qualified individuals who are in the early or mid-stages of dementia.

This is a huge failure of government, non-profit organizations, dementia charities and advocacy groups, and Foundations.

My free advice to you is that you should get GYST.

The current advisory group I am working with has a consensus in support of my recommendation.

JANUARY 27, 2016

The new members of our committee also agree with our existing position.

Fred

If everyone with early and mid-stage dementia had a planning and information mind map like this one every day, there may be much less anxiety and stress among those living with dementia and their caregivers. Not all. But quite a few.

For more information, click HERE.

This post is part of Huba’s Integrated Theory of Mind Mapping. Click here for an index and links to the other posts.

In a prior post, I discussed my theory of how and why mind mapping is useful for people with impaired cognitive functioning and dementia. I noted there that the same general theorem could be applied to those with typical cognitive functioning. The difference between the mind map in this post and that of the prior post is how about a dozen branches are relabelled. This map emphasizes making “healthy” brains closer to optimal functioning. The prior post used the language of a “disease” or “disorder” that might be worked around by using a mind map as an assistive device.

Click HERE to see the prior post.

Click the image below to expand its size.

© 2015 g j huba phd <===> a HubaMap™

This post is part of Huba’s Integrated Theory of Mind Mapping. You can access an index and links to the other posts about the theory by clicking here.

The Integrated Theory goes beyond any explanation of mind mapping for individuals with or without cognitive impairment that I have ever read and I am pretty familiar with the mind mapping literature as well as major extant theories in neuroscience.

Click on the mind map to expand it.

And, you ask, does this theorem also apply to those with typical brain functioning such as the typical managers at IBM needing to learn creativity and organization, students in schools from primary grades to students-for-life learning all types of curricula, healthcare providers, researchers, educators, the guy in the next cubicle who can never remember his meetings. Yes. The labels on the branches are a little different but the concepts are identical.

Huba’s Integrated Theory as applied to “typical” thinkers is discussed HERE.

Concerned that the theory looks kind of simple? It is actually quite complex. I spent more than a year trying to formulate it as simply as possible..

© 2015 g j huba phd <===> a HubaMap™

Word processors were not in common usage until the late 1980s, early 1990s.

The context of how a memory was originally stored is important. Using a pen instead of a word processor might be helpful when you are trying to remember the good-bad-indifferent-ugly old days and to write down lists of memories.

Or, if you are working with an older person — and perhaps one whose memory is failing — you might want to hand them a pencil or pen like the ones they used when they were much younger and ask them to write down what they remember. Having an old-fashioned pen or pencil in their hand might help open some memories. And, if you look in an old dresser or desk drawer of an older person, you will probably find some cherished pens in the top drawer that were birthday presents or work awards or something they received when graduating from school.

Putting a pen in someone’s hand and seeing if they remember better is a very inexpensive and easy thing to do. Most people started taking notes when they were children using handwriting tools and continue to this day. Recreate the original experience and see if the association helps unlock some memories.

Mind Models are also known as Mind Maps. By my definition, a mind model is a very sophisticated form of mind map that incorporates expert information and state-of-the-art communication and thinking techniques.

Now here we have an interesting topic.

Consider these “facts” …

• I have dementia, probably still in early-mid or mid stages. Every morning I spend an hour or two obsessing about what color ink to put in my fountain pens for doodling later in the day. I spend hours avoiding some fairly simple things (calling the pharmacy for prescription refills, calling my neurologist and getting an appointment, calling a few dentists and getting an initial appointment as I have not had preventive dentistry since being diagnosed with brain disease, etc).
• I’m still contemplating at almost noon today showering, getting dressed, and shaving.
• I don’t think all that well — ideas are coming in very fast but being ignored because I cannot grab an important one and think about its implications and develop a plan.
• I start to mind map/model at mid-morning. With the window to iMindMap open, I start to pull together some ideas I have put together in the omnipresent notebook I have in my pocket along with a few pens with the really cool color inks I selected for the day after an hour of great indecision.
• I get some ideas going fairly quickly. Within 10 minutes I am generating ideas and typing them into a map. The ideas come rapidly but not too fast to get into the map (80% of the time).
• I shut out anxiety, irrelevant troubling thoughts, distractions.
• I typically produce a map/model like that just below in about an hour or less.
• I save the file. I close the window. Pretty soon the ideas I have in the map/model will almost certainly escape me and I will not really remember the details of the map, what it was about, or much of the content at all.
• Periodically some of the information in the map/model will come back to me and then typically be forgotten again hopefully after inspiring some new thoughts to rise up to consciousness.
• If I open my browser and look up one of these blog posts I will immediately understand the mind map and know why it has the content that we all see. If I open up the mind mapping program, I can remember the map, its logic, why I used the style it appears in, and issues I considered in depth while developing it (down to the reason I chose a specific font or color scheme).
• If I close the program or the window to the online blog, away goes that information. I can recall big points later with great difficulty.

The mind mapping process is a very enjoyable one. It lets me think like I used to before receiving the diagnosis of brain disease. I can no longer think in that way without using mind mapping or several alternate techniques.

Knowing how to use mind mapping related thinking techniques has — I believe for myself — permitted me to retain a fair amount of independence (not all of it, but more than I would have predicted from the published clinical literature) and enhance my quality of life.

If you are in a similar situation to me or are concerned that in 5 or 25 years from now you might be, consider learning to mind map, especially using Buzan-style organic mind maps and Huba-style mind models. You will potentially gain great benefits now or in the future.

Consult your mind maps/models. The past comes back whether it was years ago or 20 minutes ago. This is especially for that “current thinking” information you lose almost immediately if not documented as you think.

Click on the mind map to expand it.

@ 2015 g j huba phd <===> a HubaMap™

If …

• you have dementia
• you want to prepare for possible cognitive decline (and maybe dementia)
• you want to use information more effectively in your life, career, activities

try to become a world-class visual thinker before advancing to cognitive impairment or dementia. If you are in the early stages of dementia you might also benefit from some of these technique.

There are many posts about these different methods and topics in this blog. Use the search tool to find appropriate posts.

I will continue to make new posts in this series about each of the topics listed in the mind map.

Click the mind map to expand it.

I personally use the methods listed in the mind map to help me deal with my own dementia. I think I am doing a pretty good job of that and you might also, although there are absolutely NO guarantees and I am not suggesting that everyone should try what I do as it is quite possible that they will not benefit if they do experiment with the techniques.

But if you are facing the issues that I am, or are concerned about being prepared for the future whether good or bad, consider looking at visual thinking methods. I learned much, primarily from the writings of Tony Buzan on mind mapping and visual thinking, the writings of Jerome L Singer on mental imagery and daydreaming and my opportunity to work with him when I was much younger, and the encyclopedic work of Roy Grubb on computer programs for visual thinking that has proven to be quite valuable to me. Perhaps the same skills will be helpful to you. It costs little but time to acquire the necessary skills.

Start with mind mapping (Buzan style), doodling and daydreaming in a positive-constructive way, and rich visual note-taking (in the style of Mike Rohde). These are all quite accessible methods.

© 2015 g j huba phd <===> a HubaMap™

The two most important “doctors” I have for trying to remain self sufficient are Dr Google and Dr Me. To a large degree these “doctors” help me plan, schedule, and try to stay independent as well as lessening the burden my disease places on my caregivers. Both Dr Google and Dr Me are largely dependent upon useful and quality and relevant information on the Internet that will guide the decisions I need to make about my own non-medical care. Unlike my medical providers who require appointments weeks (months) in advance, Dr Google and Dr Me are available to consult 24/7 without cost. Make your website communicate better to Dr Me (who has dementia) and you will help him and Dr Google maintain my ability to understand and care for myself. Dr Me and Dr Google advise me on the non-medical activities I can undertake to maintain my quality of life.

As an aside, Dr Google also consults with me as information on my blog site are indexed and catalogued.

FOR ANY AND ALL MEDICAL ADVICE, CALL YOUR DOCTOR IMMEDIATELY.

Click on the image below to expand it. The mind map shows how Dr Google and Dr Me can work together.

© 2015 g j huba phd <===> a HubaMap™

I have concluded that most of what I do for myself as Dr Me is care (case) management. I apply information available and which I can evaluate to help me guide my schedule, my diet, and some of my social interactions. I use techniques I learned or developed to help me think better.

Can everyone get a care (case) manager? Most medical insurance (including Medicare) does not pay for case management so the answer is no. There are, however, various social agencies (check you local area or ask your doctor) who will provide case management for seniors in general and those with special needs for assistance such as people with dementia. Often these services can be obtained at low cost or free. Among others, many religious congregations provide such social services, and usually to all individuals of need irrespective of religion (or lack thereof). Other agencies may be targeted toward LGBTQ or female populations, individuals from specific communities, individuals from cultural and ethnic and racial groups, or individuals with specific diseases. Such agencies will help anyone needing assistance by either providing aid themselves or making sure that you have a referral to the correct agency. Many counties have dedicated agencies to help the elderly (Area Agencies on Aging or a similar name); look at your phonebook or at a local web site and call a local government office. Additionally, many first responders (police officers, fire fighters, emergency medical technicians) are trained to put you in touch with appropriate social service agencies or guide you to someone who can. And, of course, your doctor can guide you to appropriate social care agencies that can help you or train your caregiver.

The combine of professional football teams, colleges, media outlets, and high schools has created a huge scheme in which each of the combine members receives huge profits which are only shared with a few thousand professional players. All but a few hundred elite players per year, out of more than 1 million athletes involved at the high school and college levels, is ever paid for their involvement with the sport. All players are prone to irreversible brain damage and other medical consequences of playing. Their educations are interrupted by punishing practice schedules and travel commitments that make full and effective participation in the classroom virtually impossible.

This is a national tragedy.

If you do not use visual methods to enhance your memory and powers of decision making and ability to prioritize and methods of communication you are a fool.

How do I know this? Do I look like a fool to you? Have you seen all of the visual stuff on this blog site?

I have started to add this logo to many of my posts.

Here is what it means.

In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among diseases).

Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.

Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.

For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.

I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 95,000 followers on Twitter, 350 friends on Facebook, more than 2,000 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.

If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.

More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.

Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.

Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.

Without “work” I would be a mess.

After all, I spent 35 years as a knowledge worker. I expected to work until 75, instead I was fully disabled at 59. I got depressed and a little lost. Then I put myself to “work,” not as employee in a real work setting which would have been impossible but at home to regulate me and my behavior and try to make as much of my experience available to others as possible.

And I did some work on the theory of mind mapping by and for people with dementia, old people, young people, those in the healthcare or social care systems, those who provide services, families, caregivers, and others.

I am extremely proud of the “work” on the theory of mind mapping and the applications I prepared over three years.

It kept me from becoming a “mess.” Perhaps it will help you deal with dementia better if you keep yourself regulated using the familiar workplace schedule in which you were for decades before becoming disabled.. For some it is a good strategy to try to keep going in a secure environment (for me, it was my career) even inefficiently handled. I never could have worked in a real environment, but it was good for me to be the CEO of the George Huba Fantasy Workplace. Heck, I did such a good job, I even gave myself a raise and an extra week of vacation and a two-hour lunch with nap times as needed.

Click the mind map to expand it.