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Father’s Day was a little “complicated” in our family. Through my own stupidity (or arrogant “dumbness”) I managed to get myself dehydrated on Saturday from heat and sun exposure and lack of sufficient hydration. Turns out that I am taking two medications that may have interacted in that both work by regulating the kidney.

So with a very low blood pressure and dizziness and some temporary short cognitive responses, I was brought into the ER at 1 PM. We had been going to see a movie for Father’s Day before I stumbled getting out of the car.

It was an “interesting” day to say the least. Everything was fine less than eight hours later; I had rehydrated, the blood pressure came up and medication adjustments were made.

Never one to be turned away from trying to make lemonade out of lemons, I came up with the following mind map to explain what had happened and more importantly what may have failed in the healthcare system that ended up in my creation of a number of costs that were quite unnecessary and will be paid by the US Medicare insurance. My guess is that had $20-$50 annually have been available to help educate and monitor my self care behaviors through a dementia life plan customized for my medical and psychological issues and history of medical problems, we might have avoided several thousand dollars of emergency care caused by the combination of my unknowing risky behavior and the fact that I am taking two medications that may have jointly affected my physiology in an unusual way that interacted with hydration.

If we can develop Self Care Plans for individuals in the early stages of dementia we probably can avoid at least some unnecessary healthcare costs and some of the burden on unpaid, family caregivers.

It is also very important to further train healthcare providers about dealing with individuals with dementia. Doctors and nurses seem — like most people — to assume that those with dementia will be clearly “sick” in an easily discernable way. I am still literate (although increasingly I use the wrong words) and able to communicate in a way that greatly exceeds my true level of disease. But I cannot figure out stupid stuff like how avoid getting dehydrated to such a great degree and monitoring myself so that I do not end up in the ER while at the same time I can still discuss technical details with healthcare providers but not necessarily able to recall what was being said a few minutes (seconds) later or agreeing with provider’s logic but being unable to follow the same logical train of thought and action later on my own part. I think that doctors and nurses may overestimate how well the “average person with dementia” is functioning because most of the cases they see are late stage Alzheimer’s Disease and by comparison, people in the earlier stages who cannot figure out to stay out of the sun may still seem more like “typically aging individuals” rather than individuals with very significant neurocognitive issues.

My ideas in a MindModel (aka mind map). Click on the image to expand the MindModel.

Father's Day with Dementia in the Emergency Room Lessons Learned

 

 

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The US government — either through commercial insurance companies or self insurance — shouold be providing a free term life insurance policy to those individuals (doctors, nurses, other healthcare professionals, facilities maintence workers, ambulance drivers, paraprofessionals, other) who die from COVID because of providing services to others with COVID. The cost of such policies is not high because they are for terms, not for a lifetime, and can be restricted to deaths caused by COVID directly or indirectly.

The people who unselfishly protect you andd your family from COVID today should be assured that the people of the United States will aid their families if they die while performing these services.

Anything less is just plain unfair.

I’d suggest a total of $3,000,000 OR MORE paid over 10 years from the time of the death. I’d also suggest that the payment for each person eligible (whether doctor or nurse or technician or facilities workers or ambulance drivers or teacher or other eligible individuals) should be the same.

Coverage should be retroactive for those who have already died before this policy is adopted.

We have a responsibility to insure that the families of our COVID-related workers are not destroyed as a result of taking care of the rest of us.

The most cost-effective improvement that can be made to the global dementia healthcare system is to improve free online education modules for dementia caregivers.

Online caregiver and patient education is effectively free. Educational modules developed in countries leading the world in dementia care such as the UK, may be placed online and available to the rest of the English-speaking world within a day and available in translations and culturally-appropriate versions shortly after. No printing costs, no freight bills, and instant updates regularly.

Virtually all dementia caregiving is done without compensation by highly motivated family members who themselves have jobs, families, and other issues to attend to. Better caregiver education can hopefully make family caregiving more efficient and effective at least partially easing some of the huge burden of being a caretaker. Many people with dementia can, at least in the early stages of the disease, also be more independent with the support of appropriate training. Care can improve by supporting family caregivers and persons with dementia expanding their own self-care.

Unfortunately, existing materials on the Internet @#$%. These need to be overhauled now and updated frequently. Training dementia caregivers in basic principles and skills must be made more problem-solution based with caregivers trained to recognize specific problems and provide appropriate and effective interventions (including immediately moving the person with dementia into emergency medical care when needed). I find it interesting that there are thousands of books and websites on how to recognize and intervene in thousands of specific conditions with infants and young children but virtually no usable information online on to intervene when specific problems occur in people with dementia. A small amount of money (in the tens of millions of dollars or euros, not billions) could immediately upgrade the skills of literally millions of caregivers.

A word of caution. If a funding agency wants to get useful very specific and concrete educational materials for caregivers developed, do not make grants to a bunch of academic medical centers and academic research faculty. One reason the online educational models for dementia caregiving are so poor is that they are developed by academic medical faculty and the materials are usually not concretely clinical enough. Either get the materials developed in community medical and social care clinics, or make the grants to Schools of Nursing and Social Work where practical clinical tools for the community are valued and developed.

Click on the Mind Model to expand it.

Online Education for Caregivers of Persons with Dementia (PWDs) Needs to Be Revised

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No covid vaccine yet. Even if one were to be fully tested and proven safe and effective tomorrow, you probably could not get a shot until 6-9 months later.

Mask use seems to be topping out at around 70% in the United States and even conscientious mask wearer and social distancers are getting pandemic fatigue and less conscientious about always using protective behaviors.

The USA is not using behavior change and social support methods to help deal with unhealthy and potentially virus-spreading behaviors.

Instead of promising a vaccine and telling me to wear a mask, how about some social support methods to help with people feeling the depression and anxiety and hopelessness and fatigue and loneliness that comes during a pandemic. Most Americans could use some support in dealing with the balance between working and providing childcare/homeschooling. Or the frustration of being alone at Thanksgiving.

How about promoting behavior change and showing people how to get a mask to fit comfortably and correctly, or showing people how to judge they are six feet away from others. How about getting cigarette smokers to stand 12 feet away from others as they do the huffing and puffing thing in service to nicotine addiction.

A lot of people would benefit from counseling and group support-self help groups during a pandemic.

Many need a case manager to help them get food or a place to live or a job or child care or eviction or mortgage default. Others may need a legal counselor to help deal with problems incurred because of wholesale job loss and the resultant loss of life savings.

To stop the spread of COVID-19 you cannot just tell someone to wear a mask or not go to a family member for support.

What you need to do is to help individuals with pandemic fatigue and other problems find ways to constructively deal with the pandemic and get help from public sources.

Fortunately, most of the social services needed to help many people deal better with the pandemic can be provided by trained mental health and healthcare professionals and their assistants. When provided by telephone or video sessions or online support groups and counseling or specific advice to someone getting evicted these services are much less expensive than treating someone in the hospital or outpatient clinic who has become infected with COVID-19. And of course, every person who gets COVID-19 can potentially die or be affected by lingering symptoms for the rest of their lives, and the cost of any life or development of a lifetime disability is one we should try to avoid as completely as possible.

If we want to cut the levels of COVID-19 we need to up the prevention, support, and behavior change services we provide.

Click on the mind map to expand it and look at the issues in providing behavioral and support services that could make it easier for people to avoid dangerous behaviors that spread the disease.

During the earlier stages of dementia, it may be possible for a person with dementia to self manage their own medical care (no, dummy, you still have to see your doctor but you may be able to manage your own medications, get yourself to the doctor, and perform typical activities of daily living). But then again, it is quite confusing and the health system puts up all kinds of barriers that are extremely difficult to navigate, at least for me [and I spent 25 years as a consultant to the US government and local agencies about where the barriers are in their own systems and how to get around them].

Here are some of the barriers I have identified when one attempts self-managed early-stage dementia care.

Barriers to Dementia Care

And yes, adding a case manager into the treatment mix is cost-effective as the case management costs would be less than the extra medical expenses incurred by the 99.9% of the patients (and their caregivers) who do not understand the system.

Blue Tie Business Man - Confused9Geek Boy - Confused92015-04-07_11-33-24

Archival note.

The next diagram is my first handwritten draft of the map above. I made it at lunch one day when the idea came to me, rapidly scribbled it down, and then lost the piece of paper in my computer bag for a couple of weeks.

It was a good prototype for the computer map. Note that when I go from handwritten maps to final ones in the computer, I usually change them to be much more compliant with Buzan’s rules and my own and in doing so, usually make the work more hierarchical as happens naturally when one tries to impose one concept (or one word) per branch. BTW, I am of the opinion that orange is the best writing color to use for myself in that it sparks creativity, and I believe that this may also be true for many others with dementia or those aging without neurocognitive disorder. More on this elsewhere.

2015_05_01_20_04_042

Think about entering the healthcare system as a patient. You get handed 5 pages of tiny font sheets to fill in with your address, person paying the bills, the medical history of yourself and two generations back every time you go in, You scribble out answers into tiny boxes and hand the forms back. Then they give you 3 small-font pages of legal disclaimers and conditions to read and approve.

Next a nurse takes you aside for a blood pressure reading, a weight assessment, and various other information. He scribbles all of the resuolts into a chart.

Next up the doctor enters. She scans all of the paper you filled out and what the nurse wrote down, and then starts asking you questions in a shotgun approach. When you comment that the answer is still what you wrote down 5 minutes earlier, she is not impressed.

Later the doctor gives you instructions. She goes fast but alo types the suggestions into an EMR (electronic medical record). You may lose the form (common with the cognitive diagnoses I have), not understand everything in the report, and not be able to read 2 point text. but at least you can recover what she wrote.

Don’t they always say a picture is worth 1,000 words? Don’t most people agree with that statement?

For the current aging birth cohort (boomers), images are a way of life. Photos were available when we were born and financially accessible to most by the mid-1960s. The number of pictures increased in newspapers and later on the Internet over the past 50 years. Immediate images and videos from the ubiquitous smartphones have been available to the majority of world-wide families for the past 5 years.

Home black and white television sets became very common in the 1950s and color televisions in the late 1960s.. By the 1990 many US homes had more than one television set. In the 2000s screen (flat panel) sizes at least doubled in size in most homes. 700 channels and 3 TV sets and and nothing on.

We all use images constantly and reading text is going down. We primarily get our news from pictures on the Internet, in print media, and shared with friends or on social media. Pictures are used to influence our attitudes, behaviors, preferences, and to sell us products.

I have been working hard at creating and using images in my own healthcare for the past 9 years after I was diagnosed with a progressive neurocognitive disorder.

About six months ago I had a PET scan of my brain as well as my fourth MRI since 2010. I now have two neurologists. The secondary one (a cognitive neurologist who ordered the scans) emailed me a one page written report wit the results. No images were shown on that report. At my following appointment she discussed the report with me. She commented that there were no images to see. I then asked her if she was going to correct the conceptual typo in the report. In the first summary paragraph of the report it said that my PET scan was normal; the remaining two-thirds of the report gave numbers that indicated portions of my brain were not functioning well. Then the first paragraph was repeated at the end but this time the summary was identical in all but one word which said that my scans indicated significant problems. The doctor sent an email to medical transcription while I was there pointing out the problem.

I asked to see the scan and was told that there was nothing for me to see. I was more than a little surprised by that (well a lot surprised!). I had thought that it would be cool to see which parts of my brain were goners and which were lighting up.

A month later I saw my primary neurologist who has been in charge of my care for more than 9 years. I asked her if she had read the report on my PET scan and last MRI. I explained that I was really surprised that the other neurologist told me that there was nothing for me to see. So she then went to her large clinical display, called up my file and showed me sequential MRI and PET scans. It was pretty easy to see changes in my brain over time. Nice pictures, too. I learned a lot about my treatment and disease progression over time.

A picture is worth 10,000 words. Five scans over 10 years is a treasure trove.

Visual patient-provider information exchanges can be aided by images. Self management and that by a caretaker can be aided by images. Memory can be enhanced with images. An understanding of the problem may be more easily achieved by family members and the patient when supported by images. This is a win-win-win-win situation.

The system I used for creating images to manage information allows me to manage myself better, relieve stress I put on caregivers, understand medical research better, and communicate with my doctors clearly. It primarily uses mind maps. Both neurologists have concluded that I use my techniques to compensate for some of my neurological (brain functioning) problems.

There are about 700 posts on this web site about issues in using mind maps, how to do it, my experiences, and “real” examples of using visual thinking methods as my cognitive functioning declined.

Oh … It should be noted I estimate that using visual methods of processing medical information for ONE YEAR are very inexpensive in comparison to ONE Emergency Room visit, ONE primary health care visit, ONE week of a patient’s period of acceptable cognitive functioning, ONE day of wasted homecare, ONE day out of work for a family caregiver. Now let’s multiply that by the number of Americans receiving healthcare through self pay or public insurance programs (Medicaid, Medicare, others) or private company managed health insurers.

Here’s another mind map about how the healthcare system might be made better (and less expensive) by incorporating health care information into mind maps and passing them around among patients, caregivers, family members, friends, physicians, nurses, and other healthcare professionals.

Click the image to expand the mind map.

In March 2018, @USNews and @AetnaNews published key results from their study of approximately 3,000 US counties. Each of these counties received a total score as an index of how healthy the community is as well as scores on 10 component parts of being a healthy community. Eighty indicators of community health were developed from standard, well-constructed, and valid datasets.

The Healthiest Communities rankings are based on well-collected longitudinal survey data from US government databases and those of well-established, not-for-profit organizations.

Click here to see the full report in a new window.

My professional conclusion is that the study is valid, reliable, and relevant. The index scores are based on a combination of expert judgment from independent professionals and data sources that are among the best available. Statistical analyses appear to be appropriate and expertly applied. Of course, as with all such studies, over time additional analyses can be made, interpretations can be added by experts of many disciplines not limited to health, and supplemental quantitative (numerical) and qualitative (judgment) data can be collected.

The report on America’s Healthiest Communities provides a summary of the top 500 communities. The remaining rankings are not revealed as the intent is to identify excellence and study it to establish models for other counties that are also working to improve the quality of life for their residents.

Data available on each community includes well-constructed indices of the following characteristics listed in the mind map below. Click on the map to increase its size.

3D What is a Healthy Community ##### U.S. News & Aetna Foundation

I spent more than 25 years in my post-doctorate career studying the health of communities throughout the USA, including  a) small “frontier counties” too small to be considered rural where there were 5 times as many cows as people and the trip to a doctor was more than an hour for more than 50 percent of the population; b) the fourth largest U.S. county in a location on the Mexican border; c) large-city neighboring “bedroom” counties; and d) healthcare systems in more than 100 other U.S counties. My work (in collaboration with my business partner Dr. Lisa Melchior and our staff at The Measurement Group) was primarily focused on developing high quality, effective, and accessible care and treatment for people with mental health problems, drug and alcohol abuse and addiction, HIV/AIDS, extreme poverty, unstable families, inadequate or housing, poor education, immigration status, criminal justice system involvement, dependence on public-supported health- and social-care systems, and legal unemployment with a subsequent dependence upon “illegal employment” such as selling drugs and sex work in order to support themselves and their minor children.

Dr. Melchior continues our work.

As we worked with health systems and clinics, what I concluded was that a very comprehensive service system with widespread support among residents, service providers, and elected officials was necessary to make a community healthy. It was clear that all of the major stakeholders in the system need to communicate clearly to the other stakeholders about what they could and could not do with available resources. Stakeholders needed to learn to how to leverage their resources with those of other stakeholders to provide better services for a lower cost. A permanent system of making decisions and sharing resources and improving services needed to be formed and nourished.

The basic components of our work included assembling data from sources such as surveys, focus groups, interviews, and public databases. We presented these data to groups of stakeholders and facilitated discussions on how various systems such as healthcare, public housing, law enforcement, and education-training could work together and share resources. Progress was monitored and evaluated and new cycles of data gathering, communicating, discussions, and program alterations were conducted.

The following diagram shows the steps our process went through in order to build a self-sustaining system of interdependent services and joint decision-making in order to make a community more healthy. Click on the mind map to increase its size.

It is often said that “it takes a village” to plan and implement long-lasting improvements in a community. It does, but it takes a few other things also as well. Click on the diagram to increase its size.

It Takes a Village

 

The title of this post is the #1 question (comment) I receive on Twitter when I make a post about content on this site.

The answer to the question is a guarded yes. Most (in excess of 85%) cover basic issues in caregiving, healthcare, patient management, note-taking, self description, cognitive issues, case management, family management, and resources within the healthcare system. Some is specific to dementia (mind maps on types, treatments, research, experiences of those with dementia).

My expertise, research and personal interests, and personal theories derive from within the context of dementia in terms of my professional interests, experience as a caregiver for my mother and grandfather, research, test development and personal experiences. So I always present my ideas targeted toward persons living with dementia, their caregivers and medical providers, dementia care/case managers, and those adults concerned with improving and or maintaining their own cognitive skills or preparing for cognitive decline.

There are many applications of my ideas to many chronic and acute healthcare conditions. Caregiving issues are in many cases the same, healthcare management of different conditions may be fairly similar, and nobody has enough resources to do what they actually want to do.

Where I have great reservations in applying (or extending) my ideas about cognitive skills and quality of life is in understanding and intervening in cognitive and the other medical, and mental health issues of children and adolescents. ADHD, adolescent suicide prevention, youthful problem behaviors, dyslexia, and many other conditions require very specialized professional training. Caregiving by family members and paid trained-paid caregivers often requires different skills, knowledge, and emotional supports than it may for adult patients. While many trivialize the issues and state that declining older adults are like children, such a statement makes minimizes (in a way both pathetic and potentially dangers) the very real and large differences in the care of these groups at either end of the age spectrum.

NO posts or mind models in this blog are specialized for the very real unique needs of children, adolescents, and sometimes younger adults.

Click on the image to expand.

 

People who learn to take responsibility for their own actions could save me a lot of money.

They

  • have less kids born into families that cannot support them saving me money on social programs
  • are less likely to contract STDs especially HIV thus saving me money on STD prevention and treatment programs
  • graduate from high school (and college and grad school) thus qualifying them to be in higher tax brackets and save me from higher tax rates and subsidizing their living costs
  • live longer because they forgo tobacco and drinking alcohol to excess thus saving the entire health care system from huge wasted services
  • pick up their garbage and put it in trash receptacles thus saving me having to pay someone to pick up after them
  • recycle thus cutting the bill for environmental cleanup

The USA should incentivize self responsibility by granting payments to

  • every student who ever graduates from high school
  • every student who ever graduates from college
  • every student who ever earns a graduate degree
  • every 18 year old who has never had an STD
  • every 18 year old woman who has never been pregnant
  • every 18 year old man who has never fathered a child
  • every 21 year old who has never been convicted of a DUI offense
  • every 21 year old who has never used tobacco
  • every 21 year old who has a “normal” weight and is neither obese nor dangerously underweight
  • every 40 year old who has a “normal” weight and is neither obese nor dangerously underweight
  • every 50 year old who has never been convicted of a DUI offense
  • every 60 year old who has a “normal” weight and is neither obese nor dangerously underweight

Incentives would be in the form of one-time tax credits for the individual or the individual’s family. This means that incentives are only paid to workers and their families.

Oh, the government would supply free voluntary services to all residents on birth control methods including condoms freely available to all children old enough to conceive, unlimited voluntary counseling on avoiding self destructive behaviors, unlimited voluntary counseling on leading a healthy life, and unlimited voluntary counseling for reasons of family instability, mental health, child rearing, and birth control. None of these free services would include any components related to any religion. And legitimate and effective education at all levels from preschool through college would be free to any American resident of any age and with support services to ensure anyone can graduate.

If the USA were to provide fairly significant incentives for learning and exercising self responsible behaviors we could produce a citizenry that creates less problems and is less dependent upon social network and support programs for themselves and their children. This will leave a lot of money to spend on those who truly cannot deal with their own medical and psychological problems no matter what they personally do and probably leave some over for lower tax rates.

Wow. Incentives for studying, working hard, becoming a productive member of society, and paying for needed and fully effective programs for all of those who have mental or physical or developmental disease and cannot legitimately assume full responsibility for all aspects of their lives.

I’d love to see a similar set of ways to incentivize healthcare and education workers. Small increases in productivity and job satisfaction among these critical citizens saves a lot of money and produces a much more healthy society.

Oh, I know, I am a dreamer. After all, my proposal could never make it through Congress. Even though it will save lots of money, promote better lives through self responsibility, and leave sufficient resources for those who truly need medical and mental health services because of factors beyond their control, this is truly an anti-American proposal that expects self responsibility and does not let big religion bully small religions, agnostics, or atheists around.

Every once in a while we need a little revolution.

Imagine.

[Musings of a very liberal, very capitalist, individual who believes in self responsibility and taking care of anyone who cannot take care of themselves with first-rate, state-of-the-art programs.]

Ever notice how often you yourself is as a person with dementia is confused? Ever notices how often a family member or person with dementia you care for is confused? Ever notice how often a healthcare/medical patient-client you serve is confused?

This post is about my own confusion while experiencing dementia (major neurocognitive disorder). I have no idea if my experience with confusion is representative of many or a few persons with dementia or only me. So let’s treat it as my self observations and let you decide if what I experience is like yourself or a patient-client.

Confusion is the most personally frustrating part of dementia for me. I suspect that my confusion — and not the forgetting of names or my occasional sharp tongue or my inability to censor my thoughts or tendency to get anxious and angry — is probably the aspect of my condition that is most difficult for others to deal with and understand. It is hard for another person to see why it is so difficult for me to decide which colors of fountain pen ink to use or which two t-shirts to choose for an overnight trip and but it still easy for me remember stories from throughout my career or how to use sophisticated statistical programs or to analyze my own behavior using skills I developed over the past 30 years. Confuses me too.

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What helps me confront confusion is to get as much information I can piece together on a single computer screen in a usable VISUAL form so as to facilitate seeing all of the pieces and arguments and information and associations that should be included in a conclusion and action plan.

Here is my favorite tool for visual. thinking and dealing with confusion – my own variant of the MindMap which I call the MindModel.

Maybe this will help you care for yourself or another under your daily care or a family member or a medical or mental health dementia. Maybe all of this is just idiosyncratic to me.

I do think that you should consider the possibility that I am onto something, both in terms of where all that confusion comes from and what I (and others might) do to try to deal with it.

Click on the image to expand the size.

Confusion in Dementia Personal Experiences of Contributing Factors

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.

THE MOST DIFFICULT PART OF DEMENTIA FOR ME

 

Old Elf In Blue - Two Thumbs Up

There are a lot of reasons to be overwhelmed by the occurrence of a major weather event (snow, tornado, hurricane, heavy rainfall with or without an accompanying electrical storm, flooding, extremely high or low temperatures, smog, fog, and many others). With the exception of the television stations, Internet retailers, weather forecasters, and disaster supplies merchants sold out of milk and eggs, most people are adversely impacted by extreme weather.

I think it is fair to state that those living with dementia — whether living in their own homes or various types of care facilities — are among those most affected by adverse weather conditions; I certainly feel that I am. People with dementia do not do well with ambiguity and confusion and a disruption of regular plans. Medications may be missed, panic may set in, the food pantry may be bare, and needed life supports may be missing as caregivers are stranded. And while the news broadcasters love their opportunity to get all of the air time, they get it by endlessly describing deaths, accidents, closed schools and business, police overstatements of the problem designed to keep people within their homes, and the bubble head news anchors still unable to describe anything accurately so fall back on their “horrible” stories of how difficult it was for them (self-anointed heros all) to drive into the television studio at 4 AM.

No wonder everyone living with dementia ends up confused (and worse).

A mind map of problems and suggested partial “solutions.” Click on the image to expand its size. Use your telephone to contact friends and family who may be experiencing difficulties such as those I describe.

Why a Person with Dementia May Be Overwhelmed by a Major Weather Event

If you (or anyone else) needs assistance during a major weather event, dial 911 (or your local number) and speak to your local law enforcement or emergency medical response agency. They have the equipment to make it to your location during heavy rain, flooding, blizzards, and tornadoes. The American (and world-wide) network of first responders to emergencies is a highly dedicated and well-trained group who can help in many different ways.

I have written a lot about techniques for maintaining or even improving your quality of life while you have a neurodegenerative disease or another condition causing dementia.

Ok, if for some reason or the other, you find that you are living a pretty good life of pretty good quality because you have been learning cognitive and behavioral methods to cope, there are lots of other things you can do. What are you going to do with all of that time? Here are a few suggestions in the form of a mind map. Click the image to expand it.

Living Well with Dementia Suggestions for Use of Your Time

 

The same mind map is shown as a presentation next. You can simply watch it with the automatic changing of slides or if you tap the pause button in the presentation you can use the right and left arrow keys to go through the slides at your own speed.

This slideshow requires JavaScript.

While you still can do things for yourself, you should try to minimize the burden your dementia places on your family caregivers and those hired to help. No unnecessary requests. Caregivers are there to help you with your care, not be a maid, servant, counselor, whipping post, target for frustration, psychotherapist, or camp director. If you can still do it, make your bed and your breakfast and schedule your day instead of expecting someone to do this for you while you watch the morning talk shows or endless reruns of I Love Lucy or Star Trek. Appreciate caregivers, value them, thank them, help them. Later you won’t be able to help so much but they will know that you have always tried to be as a little of a burden on them as was possible.

Get ready for the later stages of dementia. At the present time you cannot stop the progression of dementia although you can certainly prepare for things to finally get worse.

Take advantage of neuroplasticity, the way the brain will rewire itself if there is outside stimulation. Organize yourself better getting boxes of photos and other life memories together. Try to learn to do new things that will help you better deal with the later stages of dementia. You will be surprised to find how the simple step of improving your handwriting will improve your quality of life later as you become more and more dependent upon sticky notes to yourself and others. Try to be creative with art or music or just continue to use your time experiencing new movies, museums, and restaurants. Organizing, learning, being creative — all of these activities may help you help your brain to make itself adapted to working around your dementia, although it is quite likely that adaptation will not occur for many. But if not, you may still find some of these activities enjoyable and you will be giving your caregiver a break from being the cruise boat director so it is still a winning situation.

Use the “good” time you have now to make the upcoming “bad” times better. The dementia is not going to stop without new medications or other emerging new medical procedures, but you can change how you feel about your life and interact with others for the better. And, you can make the life of your caregivers better in the future by learning ways to “help yourself” now. Your daughter or partner or son or siblings never signed on to put their own lives on hold for you. Try to minimize the amount you will be forced to ask them to help by using time during the early stages of dementia to be more self sufficient later.

You can do this. A lot of it can be fun or a way of realizing that you can still do things after a diagnosis and you can still do many of them well and learn new things.

You can do this.

DGS_Robots-23

this is NOT 2015

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.

Dr Google and Dr Me Partners in My Dementia Care

© 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.

this is NOT 2015

Some Things You Might Do Before You Have Cognitive Decline

Hindsight …. [well you know that one].

Life comes at you … [you know that one too].

The GYST [pronounced gist and standing for Get Your Shit Together, or if you prefer Get Your Stuff Together] of it all is that you should get GYST before life comes at you at 100 miles per hour. Listen, I have the benefit of hindsight. And, I wish someone had sent me this mind map before I got the diagnosis.

Got GYST? Yup, I GMST.

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

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You can hold the BIG D (dementia) in check for a while.

A long long while.

GH stand-off

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

2015-04-07_11-33-24

Just “Google It” helps me maintain quite a bit of my independence. I still remember the strategies to pull facts, entertainment, social contacts, history, news, and my own writings out of the composite global memory on the Internet.

This is quite different from the experience my mother and grandfather had as their cognitive capacity disintegrated.

How I developed the mind map. It took me about 34 minutes and the video is time-lapsed so that 8 minutes of elapsed time = 1 minute of running of time.

The final map in two variations.

WHAT GOOGLE IT MEANS TO A PERSON WITH DEMENTIA TRYING TO MAINTAIN INDEPENDENCE

2WHAT GOOGLE IT MEANS TO A PERSON WITH DEMENTIA TRYING TO MAINTAIN INDEPENDENCE

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

2015-04-07_11-33-24

This is Part 11 of a series of blog posts in which I show a video of the development of the mind map and then the final map. Do access earlier posts (each of which has a different video and issue addressed), please click on a link below.

Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

Part 7

Part 8

Part 9

Part 10

Just in case you have to deal with cognitive decline and the Big D, have some tricks up your sleeve. The time to develop these is at as young an age as possible.

[These same skills will help you build a terrific career and have great intellectual and social accomplishments.]

NOW. Not later. And certainly not much later.

Click on the images to expand them.

Learn These Skills BEFORE You Have Cognitive Decline

Should you not have learned these techniques before, don’t give up because I did learn most of these skills while having cognitive impairment or dementia. Easier done earlier, but never impossible.

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How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

 

graphic weepeople © ProPublica. Used under a Creative Commons License.

At this point in my life, I am much better at drawing pictures, or structured learning and thinking pictures (mind maps), than writing out a long list of arguments.

I have “street cred” in making the points in these two mind maps. Been there, done that.

Before making the main points I’d like to tell a short story. In addition to the information in this first mind map, between 1993 and 2010, I ran many “evaluation and technical assistance centers” for the US Government on their identified and funded innovative and targeted HIV/AIDS Services programs.

The biggest lesson I ever learned as a professional during this period was that the people with the disease knew a lot more about the problems with the service system (and how to fix them) than I did. I was “schooled” in 1993 by 19-year-old Scott, a brilliant young man who was the President of Bay Area Young Positives, a peer organization. Although he never graduated from high school before he graduated to the streets of San Francisco, he knew far more about how to fix the system than I did. Before I could meet with him at a next scheduled meeting four months later, he had died from AIDS.

I thought about Scott for years as I do about many others like him I met over the next five years who have been helped by the miracle of modern combination antiretroviral therapies. In my professional judgment, at the time I knew him, Scott was probably in advanced stages of AIDS-related dementia. Yet at that time, he knew more about why the service system failed than I did. Even though he was handicapped by the communication system of the time (words and more words and anger and more angry words), he did make it clear that we were all fucked up and did not understand facts standing right in front of our noses. He was right.

Pictures and websites and 25 years of advancement in communication methods should make us better at jointly solving problems with the service system.

Sadly, in the area of dementia, these methods have not been used to their full potential.

We have to fix the websites of most dementia-related organizations. Those websites are not providing information to all (INCLUDING and especially to persons with dementia) as well as they should nor are they encouraging all to react to the contents although they do encourage all to make contributions, join research studies, visit their web stores, and come to their clinics for treatment.

Ask someone with dementia how they feel about your dementia website. You might get “schooled.” And that would be good.

Click on the images to expand them.

Why I feel I can “yell” at you …

ME SELF-PROCLAIMED DEMENTIA EXPERT

and what I have to say …

A DEMENTIA ORGANIZATION WEB SITE NOT FRIENDLY TO PEOPLE WITH DEMENTIA IS NOT OK

The two most important doctors I have for trying to remain self-sufficient are Dr Google and Dr Me. Both are largely dependent upon useful and quality and relevant information on the Internet. Unlike my 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.

Make it so. Please!!!

PS. The methods I advocate throughout my blog and book are ones that cost pennies per day for an individual to use and which would also greatly improve websites very inexpensively. Mind maps, sketchnotes, cartoons, doodles, color coding, informative videos … all ideas that work better and are not expensive to implement.

I am going to present a series of mind maps with advice about how to prepare for possible cognitive decline.

GYST!!!!! (sounds like gist)

If you take my advice, give yourself a GMST (sounds like jimst) star.

Confused? Hopefully you are confused enough to study this mind map.

Then look at my next few posts and GYST so that you can say GMST.

[This post is an example of the “odd” sense of humor that can accompany dementia especially in the earlier stages. Personally it sounds pretty funny to me and I see it as a conceptual summary of Benjamin Franklin’s famous essay. But then again, I’m there. Hopefully before you face possible cognitive decline you will be able to say GMST and use modern technology and advances in the theory of visual thinking to deal with cognitive impairment and dementia, should you be unlucky enough to have to do so. GMST will help you be able to say “I have a good life” even if the Big D hits.]

[15 minutes later … I had been trying to recall from my memory the term for the symptom of odd humor. 1 minute ago it just popped into my head. FATUOUS speech and writing meaning silly and pointless. Aaahhh heck. That is just a sign of typical aging at least as defined by those under 40.]

GYST

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

2015-04-07_11-33-24

You are going to see this text at the bottom of a lot of my blog posts. It does not embarrass me at all.

Like anyone else with dementia, I do not have a long period of time to try to make my theories, findings, and suggestions available to others. The clock is ticking on me. But I am going to beat it to the finish line with a little luck and a little help and leave behind some information others may be able to use as a springboard to help some others (or themselves). That, and support from my family, friends, and highly motivated colleagues and strangers is what is getting me to the finish line.

Text below may be repeated at the bottom of multiple blog posts.

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Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get the information to you some alternate ways.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

Geek Boy - Holding A Globe

I might be wrong, but I would bet that at least 90% of all people who use mind maps have never read a book about the topic written by Tony Buzan or another expert on the technique.

So, if you are one of the 90% you probably think mind mapping is a pretty way of formatting your (outlined) ideas or a great way of making your teacher think you know what is happening or a nice graphic to use in a PowerPoint presentation. You probably have little conception of the thinking that must go on when planning and drawing-writing a mind map. Or ever considered that mind maps incorporating continued thinking are most often developed by successive approximation. Or that established theories and findings and data should play a big part in the development of the map.

If you learned mind mapping by learning to run a mind mapping program then the odds are extremely high that you do not really use that program for mind mapping. Read a book by Buzan or study my mind map below or ideally do both.

Click map to expand.

important things about mind mapping

Can someone with brain disease and dementia do the active thinking of true mind mapping? He just did.

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Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get the information to you some alternate ways.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

I was diagnosed with neurodegenerative disease in 2009.

There is a long-standing tradition in the fields of psychology and medicine of individual (or case) studies in the early stages of studying a disease, a possible treatment, a theory, or basic research studies.

Often these studies are done to open a new field for exploration or to “seed” progress in some new ideas. In psychology, many of the theories of learning and behavior change originated from studies of single or a few individuals. In medicine, most progress starts with a skilled clinician identifying a new symptom or pattern of symptoms and biomarkers or response to a drug in a single or few individuals.

Single individual studies are widely used and considered valid by many. But they are not considered to be valid (by themselves) by the majority of the professional community.

The Number 1 NO-NO in single individual studies is to study yourself. The reasoning goes that one cannot accurately describe oneself. The commonsense part of me says that rejecting such information is STOOPID but the well-trained methodologist in me says to eliminate the possible bias by having an independent party (presumably a physician or psychologist or equally qualified and appropriate professional) conduct the study.

So I ignored my commonsense and asked more than a dozen MDs and PhDs if they would like to take advantage of the fact that I had more than 35 years of experience describing behaviors and feelings and treatments and outcomes and also was taking lots of careful notes as I tried a number of techniques to deal with the disease. Most could have also found out on the Internet that I have hundred of peer-reviewed scientific publications and was myself considered one of the methodology gods. NO takers to date to use my information or expertise. I think all of the people I approached were scared off by what their professional peers, tenure boards, department chairs, journal editors, ethics boards, and the current Methodology Gods might say. Most just ignored the “demented” person and probably felt sorry for me. One proposed that I spend thousands of dollars (which I had lost due to the brain degeneration and its effects on my financial decision making) to come to the other side of the USA so he could examine me (he had lots of grants so I informed him that I knew he would have travel funds in his many projects and that if he wanted to do research on me I would go through the hassle of a 2300 mile one-way trip he could use his research funds to pay for the ticket). After that he never responded to my email.

Although I was ignored by the academics, I took solace from the fact that about 120,000 unique individuals in social media (Twitter, Google+, Scoop.it, Linked) choose to follow my tweets, blogs, and comments. They seem to place some confidence in my judgments and communication skills. I did not disclose that I had dementia until I had about 85,000 followers but I did not dramatically lose followers after I made the announcement. The community of those who follow me is heavily weighted toward medical and healthcare professionals and organizations, psychologists, social workers, persons with dementia, care givers, family members, and mind mappers. Many of the physicians who follow me are neurologists and psychiatrists and I have healthcare followers in more than 100 countries.

So I struck out on my own. As I think about it now, I do wonder if perhaps those who are self-proclaimed independent observers-researchers could, at this time, study a person with neurodegeneration-dementia with their academic and somewhat unreal methodologies and understand the experience of the condition. Having dementia and also being able to think well at least part of the time is not something these folks or the general public “get.” So far as I know, nobody with my level of relevant training and dementia has ever come forward and states that there are a lot of methods you can do to reorganize your thinking. I used them to improve my life and trajectory through the stages of the disease, so far as I can tell. Those without dementia or cognitive impairment cannot understand that while it is a difficult mountain to climb, it is not impossible to reach the summit at least in the earlier stages of neurodegeneration and that the goal is to have a “good and enjoyable life” for as long as possible, not to “cure” the brain with better ways of storing information, keeping notes and reminders, or decision making.

Once when I questioned whether I should share all of the information I present in this blog in front of so many people my neurologist at an appointment told me that if 100,000 people were following me I should not be concerned as at any time they concluded I was wrong they could (and would) unfollow and simply not follow the information I was presenting me. While I would never expect any of my own doctors to follow my blog, she admitted that she “looked in from time to time.”

So I acknowledge to the Methodology Gods that I have sinned but I am not very worried about being thrown in the volcano for the deviation. After all, somebody with neurodegeneration-dementia has to step up and tell the “experts” that experience (in my case the synergy of the professional training and personal history) counts for a lot and and I have used some real data I have carefully collected that they should consider and use to design more studies.

So that’s it. I sinned, I am not contrite about it, and you can judge from what I have written here on my blog whether I am delusional or a thoughtful scientist. My own judgment is that both characterizations are probably true depending upon the day of the week, phase of the moon, whether my dog has been insisting that I go out in the woods with her to chase critters or whether I am suffering that day from the horrible headaches caused by the drugs (never proven to be effective or approved by the FDA for treating neurodegeneration of the type I have) that I am prescribed off-label by well-intentioned doctors hoping that I could be one of a tiny group for whom the drugs might work, at least a little for a little while. Pretty much all of the time I am glad I conducted my studies using my accumulated skills from 35 years. I am very confident that I have accurately identified what works for me. The “problem” is that there is no guarantee that my experience will be your experience. More and larger studies may be able to determine how robust my findings are and whether they can be generalized to different types of individuals with various types of dementia. My own work does not lead directly to medical or psychological advice and you should ALWAYS consult a physician or other licensed medical provider to obtain treatment.

Click on the image to expand it.

the one participant case study

The following slide presentation shows the mind map in smaller sections. The presentation will run automatically or you might wish to click the pause button in the presentation and manually navigate through the presentation using the right and left arrow keys.

This slideshow requires JavaScript.


Right from the beginning I figured that I should put my professional training and decades of experience observing behaviors of individuals, groups, and organization to use in understanding a little more about the usefulness of cognitive-behavioral tools. “Poor methodology” aside (in the environment of limited time and no research funding I faced), I think that my “research” needs to be continued by other persons living with dementia as well as skilled medical researchers (not living with dementia). I constructed the Hubaisms blog to serve as something of a roadmap and a repository of my work for the future as I expect that in 1-2 years (mid-late 2017) I will have degenerated enough so that I can no longer continue the work myself or the effects of living with the disease and a compromised immune system for a number of years will take their full toll.

This is my last research project of a very productive research career. I am proud of it. If you think the work is worth knowing about, I hope you will use the various forms of social media to point others toward this blog and specifically toward the dementia posts. I plan to continue the one subject study as long as I can.

One final note. Most of the methods of living well with dementia I test are relatively inexpensive (less than the cost of one cup of gourmet coffee a day in a coffee shop if you do not already own a PC or Mac or tablet computer which undoubted you do as you are reading this blog). If you own a PC or Mac or tablet, I estimate the cost to apply or use the techniques is less than the cost of one plain-ole old-fashioned coffee without the designer name or copper tubes. These costs should be within the means of most people with dementia or pensioners with at most, a small lifestyle change required.

Little Green Alien - Two Thumbs Up

 

Blue And White Super Girl - Two Thumbs Up

 

The_Zombie_Thinking

So you’re in your fifties. One day the doctor diagnoses the cause of your crummy mood, personality changes, increasing social isolation, difficulty making decisions, memory loss, anger, or increasing financial instability as frontotemporal dementia (frontotemporal lobar degeneration), Lewy Body dementia, early Alzheimer’s disease, multiple system atrophy, ALS, corticobasal degeneration, progressive supranuclear palsy, Huntington’s disease, Parkinson’s disease, Parkinsonism, or some combination of the preceding.

Heck you have barely even heard of most of these. Pretty much you can say that in any of these conditions various parts of your brain are failing leading to the condition that more fear far more than any other medical condition, the Big D, for DEMENTIA.

You get some commonsense (and old wives’ tale) advice from friends, neighbors, newspaper columnists, the MD and PhD who work for Oprah, Oprah, a bunch of web sites, and probably at least some of your doctors — start doing crossword puzzles and practice arithmetic.

OK. Darn, I have always hated crossword puzzles as a waste of good time better used watching ESPN. I prefer matrix algebra and calculus to arithmetic problems, although I do like to watch how the cooks measure foodstuffs on Chopped using such honored traditional techniques such as “pinches,” “handfuls,” “looks like a pound,” “feels like a quart,” and other examples of the special mathematics of the kitchen including the definitive one of ratios so you can scale your cupcake recipe from one to 37 which are most often correctly applied on baking shows.

So you have what my own senior neurological consultant referred to as a “terrible, terrible disease” of the brain. Do you pull out your iPad and scramble to complete innumerable arithmetic games and crossword puzzles?

Hell no. You congratulate yourself that you have learned those useful and continuing visual thinking skills and tools and used them for the past 40 years to enhance your life and career and education and now you open up the desk drawer where you store your mind maps, concept maps, sketchnotes, photographs, and charts.

Get with the program. Perfect this skill.

perfect this skill

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Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get the information to you some alternate ways.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of productivity and self sufficiency.

Geek Boy - Two Thumbs Up

Of course people with dementia feel stress, maybe especially because they have dementia and how it limits the way they can deal with the others and others will try to deal with them.

In my case, I have recently started to have problems understanding what people are saying to me. Spoken words are easily lost in echoes, the background noise of social situations, different styles of speaking such as diminishing volume when people are saying something private, hypersensitivity to perceived anger in areas of behavior about which I am self conscious (don’t tell me I missed an area shaving after I put the shaver down because of the environment), and don’t assume because I do not immediately respond to a question that I cannot hear you or do not understand you. I may not multitask as well as I did before. Sometimes I just have to respond to the most important things first and shaving is not the most important.

People around those with dementia may quite often misinterpret the behavior or words of the person with dementia. For many with dementia, facial expressions and other nonverbal behaviors do not match those of the majority of the population and while someone might look angry with you because their facial expression seems quite “unusual” they might actually be laughing heartily at a joke you just made. Lack of smiling does not necessarily mean lack of interest or lack of happiness. In fact, it is even quite likely that the person is most happy at those times they have a rather blank looking face because they are thinking so much about something good and enjoyable that the energy is not going into moving facial muscles.

All of this “disconnect” behavior can lead to stress for the person with dementia or cognitive impairment, the person dealing with other issues (everybody has issues), and the pair trying to have an enjoyable and productive time together.

How to cope? I have a few ideas that often work for me. Will they work for you? I DO NOT CLAIM TO KNOW NOR AM I CITING ANYONE WHO HAS ESTABLISHED EMPIRICALLY THE VALIDITY OF WHAT IS SAID BELOW. THE INFORMATION IN THE MIND MAP IS BASED ON OBSERVATIONS I HAVE MADE OF MYSELF.

THE INFORMATION BELOW IS NOT PSYCHOLOGICAL OR MEDICAL ADVICE. SEE AN APPROPRIATE MEDICAL SPECIALIST OR LICENSED MENTAL HEALTH PROVIDER IF YOU HAVE THESE ISSUES. I HAVE NEVER HAD A CLINICAL PSYCHOLOGICAL PRACTICE WITH PATIENTS, I AM NOT A PHYSICIAN, AND I DO NOT CLAIM ANY EXPERIENCE IN PROVIDING PSYCHOLOGICAL SERVICES OF A CLINICAL NATURE.

So here is a perspective based on me and containing actions I take. I make NO claim that these fit you or that any of the reactions I have are the same as yours. TALK TO A DOCTOR OR OTHER LICENSED PROFESSIONAL. Think of the following as set of hypotheses only one person (me) believes and I am not claiming that I believe that these ideas fit you.

Having said that, here are issues I think about for me.

Click the image to expand it.

stress and dementia

Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?

<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get it to you.

Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.

Let’s do this together.

I think it is fair to say that most individuals will immediately mention loss of memory (specifically Alzheimer’s Disease) as the major component of neurological decline. But there is much more to neurological decline than just grandma forgetting the names of all of her children and forgetting to take pills. Neurological decline is actually a very complex phenomenon and can include such problems as loss of executive functioning (decision making, planning), the inability to communicate through words, losing the ability to track events in time, decrease in mental flexibility and creativity, and general inability to quickly understanding something being said. Some of the diagnoses associated with neurological decline are Alzheimer’s disease, Parkinson’s disease, Dementia with Lewy Bodies, Frontotemporal Lobar Degeneration (Frontotemporal Dementia, Progressive Supranuclear Palsy, Multiple Systems Atrophy. Corticobasal Degeneration and others) as well as accidents and resultant brain trauma from such sources as automobile accidents, football, and failing to wear head protection while on bicycles.

Individuals with neurological impairment have much more complex arrays of problems in brain functioning than is captured by saying that memory is failing.

Since the technique of mind mapping has been associated with learning and memory and creativity, it has been suggested by many as a way for neurologically impaired and those with normal aging to “retain and increase memory.” However the loss of neurological functioning is very general as discussed above, and it is quite likely that methods of mind mapping will prove effective when applied to many different issues encountered by the neurologically impaired.

This mind map shows some types of loss of mental-cognitive functioning that might be helped by using mind mapping techniques both before and throughout the increasing stages of neurological impairment.

Mind maps can be used for much more than just enhancing memory for the memory-challenged. The techniques are also useful for improving communication, decision making, cognitive flexibility, multichannel information processing, calendaring and  maintaining daily schedules and self-care, generating new thoughts, understanding the “big picture” (context and subtext), and many other problem issues.

I am going to write MUCH more on this topic in the coming weeks. Next up will be a mind map showing the relationship of types of neurodegenerative conditions.

Please click on the image to zoom.

what neurologically-impaired individuals might gain from mind mapping

This is the personal blog of George J Huba PhD. I was trained as a research psychologist, have 35 years of experience in research and program evaluation of healthcare models, and was diagnosed with a neurodegenerative disease in 2010. Since my medical early retirement in 2011, I have focused my personal research on evaluating and developing inexpensive visual thinking methods (such as mind mapping/modeling) for those with cognitive decline, dementia, typical aging, or for adults who wish to minimize future cognitive decline. Having professionally worked with several thousand health- and social care professionals over 35 years, my work is informed by the dozens of disciplines working on neuroscience research, patient care, aging, caregiving, and healthcare systems development.

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The focus of the blog is on the issues shown below. If you click on the image, it will expand.

hubaisms

Click Links Below for Selected Posts

The Great Visual Thinking Machine

Dementia

Healthcare

Mind Maps/Mapping/Models

Case Management

Self Care

Caregiving

Mental Health

Big Data

Politics

ALL

This mind map shows SOME of the ways SOME people may feel during cognitive decline. The mind map is not for self-diagnosis nor is it medical or psychological advice. If you believe that these conditions affect you or an individual under your care, seek diagnosis and advice from your primary care physician, a neurologist, psychiatrist, or other physician.

Click twice on image to zoom in.

Some Feelings During Cognitive Decline to Dementia

This post does not contain medical advice. None of the methods described are known to be therapeutic. What is described are possible note-taking or information-sharing models for patient-client-self management.

For the past few months, I have been focusing on the use of mind maps to assist people with dementia, cognitive impairment, or cognitive decline deal with various issues that arise as they work hard to maintain independence.

You can access those posts simply by using the search box at the bottom of each post with keywords like “dementia” or “cognitive.” Several dozen blog posts will pop up with most very recent.

But the reality is that as dementia or other cognitive problems progress, many patients will require increasing amounts of supervision and care. Mind maps may prove to be useful in assisting a caregiver to help in a more effective, and cost–effective, manner.

  1. Just as those with cognitive decline may be able to remember, plan, express themselves, and document their lives in maps, caregivers may be able to use these techniques themselves to provide better care and client management. Mind maps may potentially help the caregiver recall the preferences of the client, as well as the client’s life history, important events, significant people, and life style
  2. Caregivers may find that visual information recorded in mind maps provides a good way for the caregiver and the client to start discussions.
  3. Caregivers may find that clients can express themselves better with pictures, drawings, doodles than in words.
  4. Caregivers may find that their own notes from each day are more useful if captured in the format of mind maps.
  5. Caregivers may find that mind maps may be used for brainstorming by themselves, with healthcare providers, with family members, and with the client ways to organize daily events, select food and clothing, remember medications, and organize social events.
  6. Caregivers may find it useful to record their own feelings in mind maps as a way of dealing with the emotional and physical stress of caregiving.
  7. The daily calendar — including doctor visits and other appointments and visitors — may be easier to prepare as a mind map and much more useful to the client.

There are dozens of other ways mind maps might be useful in caregiving. I am going to write many posts on this topic in the next months. For now, here are a few examples with many more to come.

Click on each of the images to expand it.

Preparing a Mind Map (with the help of the client or family members) of the Client’s Preferences.

Preferences  Hypothetical  Individual

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Preparing a Mind Map (with the help of the client or family members) of the Client’s Religious Beliefs.

Religious Beliefs

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Preparing a Mind Map (with the help of the client or family members) of Things the Client Especially Enjoys.

SPECIAL TREATS

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Preparing Mind Maps from the Warning Brochure that Comes with Each Prescription Refill.

possible  side effects winter

OR

SEg

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Preparing a Mind Map of Each Day for Your Use and That of the Client.

Today  Tuesday  November 12

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Technical notes. The sample mind maps here were all prepared in the computer program iMindMap, which I strongly prefer both for the way it facilitates mapping and the way it typically produces maps that can be very useful. There are alternate programs that can be used, although perhaps not with the same level of good results possible with iMindMap. Because the maps will be used by caregivers and clients, they will tend to be most effective if colorful, “bold,” graphically interesting, and with large typefaces all of which are easily done in iMindMap. Acceptable alternatives to iMindMap would be iThoughts, Inspiration on the iPad (but not on the PC or Mac), MindNode, and XMIND, although each of the alternatives will be more difficult to use to produce maps for clients with cognitive decline than is iMindMap. There are free mind map programs available or free demo versions. This is a case, however, where paid versions are far more cost-effective than the free versions or most free programs. There is a second type of mind mapping program more suitable for business purposes (the major one is MindJet MindManager and also MindDomo and MindMeister) than those caregiving applications discussed here.

:)