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

Search results for self care

One of the best things you can do for yourself …

How important are naps. Extremely so. If you can time your day around naps, you can use them to be more alert for social activities or to sleep through side effects like headaches from medications. It is amazing how mentally tired you can get from minutes or an hour or two of concentrating, even on something as “relaxing” as a video. A nap can prepare you for the next activity or eliminate the grouchiness you feel after an intense activity.

FREE.

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.

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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.

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In many cases a person with dementia expresses herself with what she believes to be a very logical thought pattern that appears to a caregiver to be quite illogical. But if a person with dementia is expressing himself in a consistent but bizarre way, it might very much be indicative of a logic which — while unintelligible or not able to be decoded by a caregiver — has a consistency and repeatability that means that a person is communicating in a personally meaningful way.

A few thoughts in a mind model (AKA mind map) created by my own demented brain. The process of mind modeling is for me an alternate way of thinking and communicating that later permits me to translate the ideas and my (but possibly not your) logical network into words you might understand.

Please click on the image to expand it.

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

 

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Healthcare (medical, health, mental health, nursing, and other health professions) mind models (or mind maps) are not the same as those plain old “knowledge” mind maps you are used to seeing.

When you start to put a compelling and artistically sophisticated mind map together that gives symptoms for diseases or recommended treatments or medical information ranging from how to put on a bandage to how deal with your elderly mom’s dementia, you have entered the realm where misinformation can hurt people. Most of the health and medical information mind maps on archival websites like Biggerplate.com have errors of content ranging from being out-of-date to misleading to downright harmful. It is not necessarily enough to read something even from a definitive source and mind map it. Rather, you have to identify definitive sources and then know how to evaluate their claims against more recent research and regulations and criticisms by credible sources.

Being called (by yourself or another source) a professional or expert or inventor mind mapper does not mean that you are qualified to mind map health or medical information. It takes at least 22 years of total education to get through the formal training and supervised practice to meet the requirements of most types of professional health-related licensure in the USA. Physicians and nurse practitioners may need to complete as as many as 32 years of formal education and supervised practice. All licensed healthcare professionals are subject to requirements for continuing education requirements after completing training and licensure in most US jurisdictions for most fields.

So before you decide to read a book on dementia and make one of your wonderful artistic mind maps, think about whether you have the necessary professional training and experience to read the relevant research and clinical literature accurately and with the perspective and sophisticated judgment that can reject erroneous claims. And when you start to make claims that mind mapping or some herbal supplement or yoga or cognitive training or crossword puzzles or some exotic mumblings you heard in Haiti can cure or treat or prevent dementia, make sure you realize that if you provide false information you may be hurting people and possibly incurring a financial liability. I respect and use mind maps (and especially Huba mind models) from people who clearly have expertise in healthcare, medicine, psychology, and related fields. I do find the mind maps of “professional mind mappers” and mind map “inventors” and mind map developers to be very poor in their content when they try to stray into healthcare-related content they really do not understand and do not stay in the areas of management consulting, training, and brainstorming where they made their fortunes.

This is a consumer-beware situation as no one regulates mind maps and their content.

A mind model (AKA mind map) looking at the issues that can arise because healthcare mind maps are not typically within the expertise of individuals identified as expert mind mappers who have not been trained in a health-related field.

Click on the image to expand it.

A Healthcare Mind Model (Mind Map) Must Be More Than A Regular Mind Map

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The backbone of the dementia care system is the relationship between a person with dementia and an unpaid family caregiver (often a daughter or aged spouse). The family caregivers often hold jobs and typically have a family of their own (frequently with young children). Weekends and evenings and vacations get “eaten up” by caregiving demands as do financial resources and interpersonal relationships with the caregiver’s friends, coworkers, and relationship partners.

At its best, the person with dementia and family caregiver partnership provides excellent care. At its worse (with the exception of a small percentage of cases of abuse or neglect possible in any care relationship), this is the best care system available to most of the population of elders and others with dementia and itself is a high-quality care system.

But the toll on the unpaid caregiver is huge.

In order to make keep this system viable, high-quality, accessible, and fair to all participants (especially unpaid caregivers), stipends and free training needs to be made available to family members. Whether such stipends come from general tax funds or the health insurances pool, if they are not made available, the system will collapse and the alternative will be lower-quality and much more expensive.

Wanna pay more and get less … destroy the system of family caregivers and PWDs by refusing to reimburse currently unpaid caregivers for their services and time and replace it with centralized facilities resulting in poorer care for elders at a higher cost. Paying family caregivers for their work with persons with dementia is not only the right thing to do, it is the cost-effective thing to do.

A mind model (AKA mind map) follows. Click on the image to expand it.

Persons with Dementia and Family Caregivers Partnership and Reciprocal Relationship

A related posting on caregiving may be accessed by clicking here.

 

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A mind model (aka mind map) on a very important topic in the care of persons with dementia for caregivers and PWD.

Much is written about the responsibilities of caregivers to those family members and others for whom they provide support, care, quality of life, and safety.

Let’s flip the issue over.

I make these suggestions from the viewpoint of a psychologist/healthcare professional who has lived well with dementia for many years. These are general guidelines and do not apply to everyone or possibly to you. But if you can, do think about these suggestions for at least a little time.

In the earlier stages of dementia — while they still can — persons with dementia need to take responsibility for caring for themselves as much as they are able to while doing so safely and consistent with their medical treatment plan as set by a medical doctor or other licensed health care professional.

If you as a person with dementia can still do something safely — or part of it or even try to do a little of it to aid a caregiver — do it. Because you have had a diagnosis of dementia does not entitle you to request assistance when you do not really need it (as determined by you AND your caregiver and doctor). Dementia or any other medical diagnosis does not entitle you to control the life of another nor to ask things of them which are not necessary.

There are things that are not safe for a person with dementia to do even in early stages and you should NOT ever try to do so. Follow your doctor’s and caregiver’s instruction on this perfectly as your judgment may be impaired even though you can still perform many tasks.

And no matter what, you can always try to remember to smile, say thank you, and express gratitude. And try to remember to not be bossy, complain because you cannot have your way all the time (often for your own safety and quality of life), and to stay cooperative, grateful, as relaxed as possible, and aware of the needs of others. As the disease progresses you will be able to do less, but why are you entitled to expect to not help or have to do it yourself at times when you can still do some things safely and adequately albeit not perfectly or as well or as fast as you used to? Do what you can to help. Remember, you are still an adult, even though you have a neurodegenerative brain condition.

I have dementia. Often I need to be reminded to stop being a jerk or being demanding or not trying as hard as I should. I often get mad (who wants to hear it) but over my lifetime I have learned to reluctantly channel that anger into trying harder and when I can, I then do something I was avoiding, I find great feelings of satisfaction both that I can still do many things and also because I cut some pressure from the lives of others who spend much time and energy protecting and helping me when it is really needed.

One final note. This probably applies to only a few caregivers who will ever read this post but it needs to be said. No patient under care should EVER be punished in any way for ever failing to live up to any suggestions in this blog post and mind model.

Click the image to expand.

Some Suggested  Responsibilities  of Persons  with Dementia  to Their Caregivers

 

For a related post on caregiving (opens in separate window), click here.

 

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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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If you are a dementia caregiver for a family member  or a professional caregiver, I bet I just got your attention. Yes, I really do want you to think about the process of providing care as a scientist would. Observe. Make up some hypotheses. Collect data over some period of time. Analyze your data by looking at your observations and seeing if they confirm your hypotheses.

When you go the doctor with your person living with dementia (PWD), show the doctor some of your “data” and present what you have concluded. See if doctor agrees with you. And in case you wonder, I believe most neurologists and psychiatrists and primary care providers would be delighted to have verbal reports every 3-6 months at follow ups.

Don’t let the words science, data, experiment, analyze, hypotheses, and confirmation scare you.

In practice this is actually pretty simple. Carry one of the ubiquitous little 3×5.5 inch notebooks around with you (Field Notes or Moleskine or Office Depot) as well as a pen or pencil. Every once in awhile, make a short sentence note of what the PWD has been doing as well emotional reactions, interest level, agitation, annoyance, laughing, and other outcomes. Note if the activity was one in which you had to participate and use a lot of energy or if it was an activity that was done semi-autonomously.

You should write down anywhere from a dozen to 50 of these notes in a day. SHORT notes. Write them down when you are not with the person under care, don’t make a big thing out of it, but you keep the small notebook in a pocket. This is not your diary or a diary of the PWD. Rather it is a simple set of observations about what was done when, how everyone involved reacted, how the PWD felt during and after it and how the caregiver felt. Which, if any, of the participants (PWD, caregiver, others) felt great distress/agitation and great interest and happiness.

Every day you should jump ahead a few blank pages in your notebook so you cannot see what you have written already. Don’t look back the first time until at least two weeks have passed

Every week or two (but more often) you should read the notes back a few days or weeks and see if there are some predictable things that happen if you leave your Mom or Dad alone to watch TV or if they are also in the room with others or they did not have breakfast at the usual time or any combinations of the factors. Do you see patterns of people and activities that almost always make the PWD calm and focused and other ones that almost always result in agitation and anger?

As you get into the swing of the research project, every time you go back and review your SHORT notes, you will get a better feel of what does or does not make the situation optimal for the person with dementia as well as for family members and the primary caregiver.

Do you have to take notes? Probably. If you write something short down, you will more accurately remember it and dozens of events that happen throughout the day or week will not get all “mushed together” in your memory.

Oh and by the way, these notes should really be fairly private. You can go back after you observe that your Dad seems to be very happy when a baseball game is on and very agitated when others interrupt the peaceful time and ask him if this is so. But you cannot pull out your notes and say that 72% of the time ….. And you can not use the notes in a punitive way. This latter point is CRITICAL and if you are going to use the data punitively against the PWD or another family member, burn all of your books and stop collecting data. And apologize and be VERY VERY contrite.

To run a great experiment of maximum usefulness to the person with dementia and the caregiver, you need to look at your notes and be objective. Your goal is to find even small things in your notes that can make life better for everyone at least some of the time. And to realize that other things just seem to happen randomly so you should not beat yourself up if your carefully planned outings to the cinema just don’t work because your Mom gets very agitated from the noise level, number of people, and high stimulation from the big screen.

Oh one last thing. If you are a PWD reading this, there is no reason you cannot keep your own research notes and try to find patterns of activities that can help your caregiver live her or his own life better by causing minimal stress to them at the same time you make your own life more meaningful. One of your huge jobs is to support your caregiver, make her or his life less difficult, and express your appreciation.

Let me be very clear. The suggestions in this post are NOT suggestions for treatment nor will the note taking and research process make your any disease process better — notes do not substitute for medical treatment or professional counseling and the level of notes you taking are not part of any type of therapy — but the process of writing down important things and going back and seeing if there are common causes of your moods and social interactions may be very useful.

Here is a mind map with some suggestions for your research project. I hope it works as well for you as it has for me, but there is absolutely no guarantee of that all. And if the process of the “research project” causes any anxiety or other negative feelings among PWDs or caregivers, it should be stopped immediately.

Click the image to expand it.

The Great Dementia Research Study

 

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[Ok, for all of you researcher types who want to nit-pick, yes I am fully aware that this is technically not an experiment or research study but rather an exploratory program evaluation of an emergent model of excellence. But they don’t teach that in 10th grade so I took a few liberties since everyone remembers their high school labs with hypotheses, theory, observations, analysis, and conclusions.]

 

 

 

 

I hate clutter. I’ve always had far too much stuff around, usually that shoved in an unused closet, the garage, storage. Old questionnaires, old clothes, old pens most run dry by now, old external data drives (in case I need an email from 1990), old office supplies, old books from grad school in the 1970s that no current grad student wants for free (no grad students buy boor professional journals in paper formats any more), boxes of new file folders (which no one uses in the computer ages), old jeans (as sizes went up and sometimes down over the years), t-shirts from the 1980s, and who knows what else. I also inherited a bunch of family heirlooms (but mostly junk but including my treasured Eagle Scout badge and transcript from grad school) in boxes from my mother. The organization systems I have tried to implement since the early 1970s have never really worked that well.

And the reason “disorganized and cluttered” could dealt with easily was that I had a very organized mind and my memory was like a steel trap; if I had observed or read or heard it, the information was there. And, damn it, I never learned to clean up after myself because there were always more exciting and new things to do. And if I needed something the odds were extremely high I could find it the random box where it had been placed.

And this was before the Internet, before the Internet with Google, before the Internet with voice-controlled Google. Information organization needs have exploded.

And this was before I had neurodegenerative disease with memory loss, significantly lowered ability to multi-task and make decisions, a big temper when frustrated, lowered ability to separate perceptual field from ground (or the object I wanted in the clutter), and many other dementia symptoms.

Now clutter just destroys me. I waste much time every day trying to find things, organize things, decide what to throw out and what to keep, and putting things where I can find them. I get extremely anxious and agitated in clutter but cannot figure what to discard without then facing a world-shattering event without the one paper or piece of clothing or knife or key or medical records that would save the world.

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(more…)

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

FOUR TYPES  OF APATHY  IN DEMENTIA

Apathy is often identified as a key symptom used for diagnostic and other purposes with dementia. Apathy seems to be most often discussed for those types of dementia-causing conditions often associated with young onset.

I believe it is possible to differentiate four types of states that are identified as “apathy.” This differentiation is quite important both for the administration of drugs and behavioral exercises to fight apathy and for planning social interactions and outings for the person with dementia if you are a #caregiver or a #family member.

Type 1 is what I would call “observer identified apathy.” Caregivers, friends, doctors, and others see an individual who does not smile or seem to react to a positive environment and assume that the person is not experiencing emotion and would like to repeat the experiences often or see the same people again. These observations may have a quite different meanings for different individuals and in fact not represent apathy. For instance, I have little control of my non-verbal expressions (face muscle control and feedback is going, going, gone) and even though I feel happy and engaged you will rarely see a smile and when I try to “force one” for the iPhones, I usually end up making a rather bizarre expression. At social gatherings I often stand by myself just watching. I am neither apathetic nor a “stalker,” rather I often disengage in large groups because I can not selectively attend to individuals or the noise is too much for me to understand what is being said. I am trying to control incoming stimuli not to ignore them. On the fringes or in a quieter space with a small group of individuals I can appear quite engaged.

Try not to over-generalize when looking at a person with dementia and assuming that they are experiencing apathy. Something quite the opposite may be happening. And I may not be ignoring you because I feel apathy or do not like you. You may simply be standing in a noisy, chaotic part of the room.

Type 2 is what I would call “true” or “experienced apathy.” The person with dementia experiences the classic symptoms.

Type 3 apathy is mislabelled depression. Many of the symptoms of depression are also indicators of apathy but the underlying causes of the behaviors may be quite different for apathy and depression. It is important to determine if the person with dementia is actually experiencing depression rather than apathy (or both) as there are medicines available that seem to be able to help control symptoms of depression.

Type 4 apathy is what I would call “deliberate apathy.” When you see me ignoring situations you find enjoyable or engaging or demanding an emotional responsible, it may be assumed that I am experiencing apathy. I might tell you that you are right, I am, but it is because I chose to for this situation. At some point as dementia progresses one may need to make decisions about which activities and people and situations are the most important and should receive as much of the rapidly dwindling supply of mental energy as possible and which should be ignored so that energy can be conserved. These are deliberate decisions that people with dementia may need to make and then adopt as part of their lifestyle. My social circle is smaller because I have had to make choices about where to direct my energy and my “ignoring” someone is not a statement of disliking or lack of concern but rather that I think my family needs my time and energy more than they do. Things I used to think were fun are ones that I may ignore or avoid now not because I fail to think that they are fun but because I have decided that other things are more fun or enjoyable for other reasons and I should invest my limited time and energy into those.

Note that several or all of these types of apathy experience may be going on in a person with dementia at the same time. It is much more complicated than it looks.

LIFE ISDGS_Monsters-13

This is another recording of my own development of mind maps to illustrate that this can be a way of communicating ideas while having cognitive impairment. I can develop models like this in less than an hour and have them published immediately on my web site.

Other posts in this sequence are

Part 1

Part 2

Part 3

Part 5

Part 6

Verbally I cannot get two sentences in a row out of my mouth so as to explain these ideas to others. Were I to try I would also be distracted by everything going on around me and probably experience great anxiety and coughing fits. You would also find it difficult to interact with me because you would want to end all of my sentences, be unable to look at me because my face goes into a fierce expression most interpret as anger when I am thinking, and be off-put because I often go into repetitive body movements (tapping fingers and feet and rubbing eyebrows) when I get moderately anxious (or worse).

This medium works. I attribute this both to the benefits of the mind mapping for everyone whether cognitively impaired or not and also to the fact that using these techniques I seem to be able to access parts of the brain that for me are less damaged than many of the other skill centers (such as speaking clearly or understanding others verbalizations or recalling the words I want to use to answer questions until 90 seconds later). Using it also makes me anxious, but much less so than trying to express myself in even small social situations.

Very importantly, the mind map lets me continually see my prior train of thought as I work. I don’t have to try to remember what I thought about 30 seconds, or 10 minutes, earlier because it is right in front of my nose on the computer screen. This is a HUGE assist.

The map is compressed so that 8 minutes appear as 1 minute. Just watch the video unfold. Then you can look at the final map more clearly using the static map.

The final mind map is shown in static form below. Click to expand.

Visual Thinking-Communication  Mind Maps Needed in the  Healthcare System

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

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.

I was sitting in the office of an individual designated as an “essential” federal employee at mid-morning on November 14, 1995. We were meeting at the US Department of Health and Human Services, Health Resources and Services Administration main offices in the Parklawn Building in Rockville, MD.

My federally funded Evaluation and Technical Support Center for a HRSA Initiative on Implementing the zidovudine protocol for preventing HIV transmission from HIV-positive mother to her child during birth was meeting with 10 federal grantees the next day in Baltimore. The meeting was mandated by the HRSA funding agreements.

Each project had at least three staff in transit to Baltimore (most by air) for the meeting the next day. At least one representative of each project was a woman living with HIV/AIDS; this was mandated.

The bell rang at noon in the Parklawn Building. The loudspeakers had started squawking earlier reminding all non-essential employees that they must exit the building by noon. Guards came through the building reminding people to leave. It was eerie to be in the second-largest US federal office building with almost no other people around.

I met with the essential employee, the head of a very large program on HIV/AIDS treatment. She could not tell me whether to have the meeting the next day. While she could guarantee that the representatives from the projects would have their travel reimbursed she could not tell me whether the scheduled meeting rooms, scheduled food service, and other costs would be covered although she would allow me to pay for costs already agreed to through contracts with the hotel. She did note that we could not use use the meeting room we had paid for nor eat any of the food we had pre-paid. The meeting would no longer be a federal meeting. Everybody there was just a private citizen meeting because they wanted to be there after being stranded by having flown to a mandatory federal meeting that was cancelled without notice. No federal employee, however, could be at the meeting because they were not working and they were not allowed to go to any activity that could be construed as federal “work” since they might then demand payment for their time.

I had to tell this to about 50 attendees at 9 am on Wednesday morning. The Maryland Dept of Health agreed to let the group use space at their offices 15 or so blocks away. Everyone walked over there in freezing rain. Maryland made available a conference room that could seat about 12 comfortably, about 25 uncomfortably, and the rest squeezed in and stood. The State Director (part of the group) lent us her personal 10 cup Mr Coffee to brew coffee. In trying to make enough coffee for 50, I broke it, and when I returned to California, I sent her another one by FedEx because I was a little annoyed that she got very upset that I had dropped the $20 machine and had announced to 50 people that I was the reason there was no coffee.

After about an hour or so of chaos and having everybody totally upset — as they should have been — about having about 15 women with HIV (many with advanced stage AIDS) in an overheated claustrophobic facility along with another 35 people in an overheated claustrophobic facility, I decided that the company I owned would personally guarantee the costs for the meeting facilities and food that had already been paid — if the government asked for the money back from anyone because I had decided that those who had come to Baltimore in good faith could meet in the rooms already paid for and eat prepaid food that was going to be thrown out. As I recall this was probably close to $5,000 or more. Fortunately no one ever asked me for the money back and since I over-ran our budget by far more than $20,000 (which we never billed) in part because the feds had totally screwed up the process, that we were even. And, no woman with HIV had fainted or otherwise hurt herself during the meeting because we did not have healthy conditions.

The grantees were — as would be expected — totally pissed off. The initiative ran for several more years, but in a fairly “inefficient” way. Chaos. The feds went back to work after Thanksgiving, but then went out again for more than a month starting in mid-December when Newt Gingrich and Bill Clinton still would not do their jobs. When the budget was settled in mid-January, the government announced it would pay all of the federal employees for all days they had been sitting at home in Maryland and Virginia and the District playing in the snow and worrying about their personal finances.

A demotivated, angry workforce went back to work to deal with a number of demotivated, angry contractors and grantees. It wasn’t the same for another two years.

Obamacare was passed by a majority of the US Congress, all of whom had been elected by the majority of their constituents. It was signed into law by a President elected by the majority of the US electoral voters as specified in the Constitution. When the Constitutionality of Obamacare was challenged by those who did not like it, the majority of the Supreme Court Justices, each confirmed when appointed by a majority of the US Senate, decided that Obamacare was constitutional.

Each step of passing Obamacare into law was done according to the specifics of the US Constitution.

Those attempting to derail Obamacare by using certain procedural technicalities in ways never intended and just plain silly, are acting in opposition to the approved Affordable Care Act passed by the Congress and approved by the President and the Supreme Court according to the procedures specified in the US Constitution.

Are those in Congressional representatives holding the budget hostage Congressional “Leaders” or (in words attributed to Al Gore) “terrorists?”

Today, I hope that the US government will decide to “feed” those sitting around waiting for their US Congress and Executive Branch to meet their Constitutionally assigned responsibilities that the elected officials of the United States have sworn to uphold. Fortunately World War II vets in wheel chairs were allowed to look at the barricaded World War II memorial on the federal mall today (the barriers were lifted by Congress members in front of TV cameras); my further hope is that all of the veterans in VA hospitals get fed dinner tonight whether or not the TV crews are parked in front of the facilities.

Those elected officials who claim that their Tea Party is as much against “taxation without representation” as the founders were in 1776, obviously have not read the Constitution resulting from the actions in 1776.  Thankfully, a majority of the Supreme Court justices and the President were in school that day.

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ELIMINATING AIDS FROM THE PLANET  G J HUBA PHD  JULY 2012

 

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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

Dementia

Healthcare

Healthcare Reform

Mind Maps/Mapping/Models

Huba’s Integrated Theory of Mind Modeling/Mapping

Writing in Mind Map

Case Management

Self Care

Caregiving

Mental Health

Visual Thinking

Computer Program Reviews

Frontotemporal Dementia

Alzheimer’s Disease

Cognitive Decline

“Normal” (Typical) Aging

HIV/AIDS

Big Data

Statistics

Politics

Personal Story (g j huba phd)

Universal Human Rights

Stories from a Lifetime

Hopes and Wishes

Personal Favorites

Hubaisms Blog – WHY?

ALL

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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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

Dementia

Healthcare

Mind Maps/Mapping/Models

Case Management

Self Care

Caregiving

Mental Health

Big Data

Politics

ALL

A few years ago I set out — as I have discussed in this blog many times — to “prove” that a person with dementia can use mind mapping in numerous ways to improve the quality of life.

Yes, a big “clinical trial” is the right way to make such a test. But I had no resources to run a clinical trial and even more importantly, no time and energy. And I mean time defined as “productive, predicted remaining life span.”

But I did have a willing participant with dementia (me) and a huge audience on social media. It is now about 4 1/2 years since I first posted a mind map on my blog site. The blog site www.Hubaisms.com now contains more than 1,000 mind maps and more than 700 posts.

Through my blog posts and their observations, usefulness to others, and my medical path, I’ve demonstrated that the technique can by used at least for one person on this planet daily and with results shown on the Internet for all to see.

No one should assume that because I believe that the method has proven effective for me that it will be effective for them. You should consult your own health care providers if you wish to try this for yourself or a person under your care.

There are many, many, many examples of the use of the methods on the blog site. What’s you excuse for not spending an hour reviewing them? My methods are useful with my dementia, but most also apply to — with a few adaptations — many other physical and mental diseases.

Click on the image below to expand it.

i-mind-map-because-2017

I have frontotemporal dementia. Over years I have not responded well or appropriately when receiving gifts.

So I thought it would be a good idea to put together a mind model of things you might want to consider when purchasing a holiday or birthday gift for a loved one living with dementia.

Here are three mind models (mind maps) on the gift giving process when the recipient is living with dementia or cognitive impairment.

For each of the images, click on it to expand.

The first diagram shows a set of practical considerations you should think about when selecting a gift.

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

The second diagram is a list of possible gifts that might also help both the person with dementia and the caregiver. Most of these suggestions are relatively inexpensive.

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

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Each of these mind models is derived from my own experience as well as my training in psychology. The models are merely ones that apply to myself and may not fit your situation. Hopefully, though, even if the models do not fit your loved one, these mind maps will get you thinking that a somewhat different approach to gift giving might be appropriate at this time.

My suggestions are focused toward gifts that might help the person with dementia and the caregiver deal with some of the symptoms of the disease.

Do realize that with certain types of dementia, there is a significant possibility that the person with dementia will not respond well to the gift. In that case suggest that you can return it, but don’t rush to do so as the longer reaction after a couple of days may be very favorable.

Happy Holidays and special occasions to all.

 

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.]

The mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.

Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.

These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.

Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.

I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.

Here is what appears in the blog posts and elsewhere on Hubaisms.com.

Click on the image to expand it.

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

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

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A lot of things that used to be simple may be difficult for you now, depending upon when you learned them and which skills are required.

If you cannot do some task you or a caregiver thinks is simple, you might be able to relearn it IN A DIFFERENT WAY. The trick is to be able to control yourself and not start doing the task the way that now always fails. Rather you need to identify a different way to perform the task — IF POSSIBLE — and then learn to do that by practicing until it gets to be natural. The Internet is a great source of suggestions. And you should never be embarrassed that you have to do something in an unusual way like eating soft vegetables (peas and lima beans and lots of others) with a spoon or holding a pencil in a different way so you can write faster or bigger. Or taping instructions (with pictures) on the refrigerator or clothes dryer. Or asking Alexa (Amazon Echo) or Siri (Apple devices) to look up information like “what is the weather today” or “what is the news today” or “play music by the Tedeschi-Trucks band.”

It takes me a long time now to look up weather on the Internet. It takes me 10 seconds to ask Alexa or Siri to look it up and read it to me. I use a spoon to eat those sneaky peas instead of not eating my vegetables. I now handle laser printer paper differently (much more slowly) because I got lots of nasty paper cuts handling it in the old fast way.

My list of tasks I needed to unlearn and relearn will not be your list. But the principle is the same. Before you give up eating peas, think about another solution or find one on the Internet or invent one. Practice so it becomes natural.

A mind model (AKA mind map) is shown below. Click the image to expand it.

Dementia Strategy Unlearn &amp; Relearn

 

Blue And White Super Girl - Two Thumbs Up

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

Everyone (and their caregivers) probably has different expectations about what it means to live well with dementia. For long as possible and as long as it is safe, your caregivers should assist you to live well in the way that you wish.

This is my definition that I apply to myself. I live well with dementia.

Be reasonable. Try to be independent. Be realistic about the time of others and cost. Be consistent with how much energy you have. BE SAFE. Follow your doctor’s recommendations and your caregivers.

You can do some (or maybe all if you have busy life and lots of energy) of the things shown in the mind model (mind map) below.

Click on the image to expand it.

What Does Living Well with Dementia Mean

 

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Yeah, I confess I presented (or had collaborators present) many hundreds of “papers” or “posters” at professional meetings in the fields of medicine, health, psychology, education, aging and probably some I have forgotten.

Finding from these meeting are OFTEN in the news, especially in the Twitter era.

The bottom-line is that most of the findings are professional meetings should not be trusted by the GENERAL PUBLIC for a variety of reasons known to professionals who attend these talks and some of the press who report them (including the press offices of some fairly prestigious universities who promote the work of their faculty in press releases).

Why? Unless the work is by a team of recognized researchers summarizing major research studies of a team or a lifetime of research, my guess is that about 80% or more of what is reported in the press from meetings is either/all of: a) preliminary work too early to report; b) work done by students and reported as a “training exercise;” c) papers presented to promote the careers of students and their mentors without much concern for how the press might overstate the importance of these self-promotions; or d) junk science.

Conferences promote that the papers accepted have passed through peer review. Well, sort of. At most conferences for which I have participated as a reviewer or chair of the program committee with ultimate responsibility for selecting papers from reviewer recommendations, the reviews have generally been more like driving through the take-out window line than stopping at a fine restaurant.

Reviews for many (but not all nor even a majority of) peer-reviewed journals are acceptably thorough, fair, only semi-politically determined, and sometimes ignore long-term friendships. As for the rest, well you “get it.” The fantasy of unbiased, peer-reviewed science that can be trusted by the general public is one “sold” by the academic research industry rather than a fact for either peer-reviewed professional meetings or peer-reviewed journals. It is true, however, that peer-reviewed journal articles are more likely (probably 35%) to be trustworthy, correct, important, and interpretable by the general public.

Remember that the majority of training in research for graduate and health professionals is to permit the professional reader to separate the pearls from the droppings, even in peer-reviewed work.

Here is a mind model (AKA mind map) about why even the most highly-trained research professionals need to be vigilant to poorly designed and executed research studies coming out of peer-reviewed major professional meetings and peer-reviewed journals.

Click on the image to expand it.

Trust Findings from [Peer-Reviewed] Health Professional Meetings I Can Sell You Idaho or California.

 

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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

I have an electronic medical record (EMR) at my healthcare system at a major university medical school.

I have decreased cognitive functioning due to neurological disease. Some days I feel depressed and low-energy in part because I have to deal with my healthcare system.

I have a ton of computer experience.

I write this blog all by myself.

I cannot get my EMR to work well for me or my healthcare system.

Something is very wrong here.

Click on the mind map/model to see what needs to be fixed and why.

IF MY EMR AT THE HEALTH SYSTEM WAS EASY TO USE, I COULD ...

Blue And White Super Girl - Two Thumbs Up

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It ain’t over til its over. And I have yet to hear the mezzo-soprano. Or the dog howling.

When you find out that you have cognitive impairment or a dementia-causing disease, you need to move to IMMEDIATELY make some changes. The quicker you start the more likely it is that you can refocus your attention and remaining resources to help yourself, caregivers, family and others have a somewhat better quality of life than if you sit around and pout and bitch and act combative. Think positive. Plan. Follow your plan as well as you can.

No you cannot “beat” dementia although you can push back very hard and assure at least a little better quality of life for yourself and your family. If you can effectively refocus, you will have many “better” days and a few more memorable ones. And your family will be less stressed. And your family will be less stressed. And your family will be less stressed. Got it?

Here’s a mind map to help you get started. Make yourself go through the process of refocusing and things can improve for at least part of the time.

Click the image to expand its size.

Dementia Gives you a Chance to Refocus Your Life

 

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Blue And White Super Girl - Two Thumbs Up

HITMM  2016

Click here for an index of all HITMM 2016 blog posts and links.

Starting April 18, 2016, I am uploading a series of posts collectively comprising Huba’s Integrated Theory of Mind Mapping or HITMM. These are being marked with the year of publication 2016 and a number in parentheses indicating the order of the post in the series.

Note that this series of posts is an overall theory of the best practices for mind mapping in real applied fields (that is, just about everything but the itsy, bitsy teeny, weeny, fairly trivial examples used in mind mapping books and courses).

My goal has been to develop a series of guidelines that are practical for patients, caregivers, clients, general folks, professionals, healthcare providers, scientists, organizations, and yes, even butchers, bakers and possibly even attorneys.

Watch for the first five or six posts this week. I am anticipating about a dozen or more posts on this topic.

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It’s taken me a year to develop these guidelines and justifications and about 1000 mind maps written for actual applications, not toy maps like those used by others. I have also tested a lot of my ideas with various readers of my blog including people with cognitive impairment and dementia, students, health care providers, the general public, caregivers, doctors, lawyers, family members of medical patients and those with mental illness, and many other types of people among the more than 110,000 people who get direct notices of my blog posts via Twitter, Linkedin, Pinterest, and Facebook.

I believe that this is the first set of mind mapping guidelines which has ever received so much comment through the wizardry and participation opportunities in social media and world-wide opportunities to study it on a web site of 600 blog posts.

Oh, and in case you wonder, I am not a relative of P. T. Barnum. Rather, I have worked 35 years as a research psychologist-program evaluator-psychometrician, received honors from the two major psychological associations in the USA, visited more 500 clinics serving most types of behavioral and medical diseases and disorders and studied their operations, and have lived well for a number of years with dementia and used these techniques myself. I also worked for a few years on the development of several major neuropsychological diagnostic tests and know how to read peer-reviewed papers in cognitive psychology, cognitive neuroscience, and clinical neurology. And I am not going to promote outdated (often fictional) ideas attributed to psychology and neuroscience and neurology such as split brains, 90% of the brain’s work being done by 10% of the brain, or digital models of an analog brain typically found in mind mapping books.

The guidelines I am presenting are the best ones I know of to help you develop mind maps that may help you to have a more productive, happier, and maybe healthier life or help you help someone else. I am not claiming that mind maps will change your brain (no definitive research has ever been on that issue which seems quite sad given the amount of money made by those who teach $5,000 courses and have $10,000 per day consulting practices justified by implying that definitive research supports everything they sell). To be specific to my case, I do not claim mind maps can cure or prevent dementia or fix up a damaged brain. But do I think it is easier to navigate the typical or dementia-affect world in a way that is joyful with a higher quality of life than one would otherwise have been able to have without using mind maps, other visual thinking tools, or related tools. What I present are NOT brain training methods of which I am somewhat skeptical, but rather thinking tools (much as traditional arithmetic and mathematics, letter writing and the creation of literature, as well as organizing, filing, using balance and spreadsheets, and drawing charts are commonly used thinking tools).

A lot of kids grow up wanting to be football players or ballerinas or doctors or musicians or lawyers or politicians or POTUS or dog catchers or (heaven forbid) whale trainers at Sea Wiorld. When I was 10 I used to write Huba’s Theory of [Whatever I was Working On at the Time] in my school notes and doodles. I was still doing so in graduate school working on my PhD degree.

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Am I trying to sell you something? Not really. All of what I know — in the most accessible way I know how to present it while having dementia — is in the posts on this blog. Yes, I copyright the posts and images so that they will not be taken from here and taken out of the context of the larger work. And yes, I may choose to synthesize the work in books or applications. But the core information is all here, free, and will continue to be so. Please cite the work appropriately if you use or quote it.

You can read all of this for free and comment on it for 100,000+ other people to see in the comments section of every post. Love it, say so and why. Hate it, say so and why. All I ask that you do not hide behind a pseudonym or “anonymous” identity. The only comments I do not approve for the site are those that contain blatant advertising, attacks on individuals other than me, spam detected by automatic processors, malware and viruses, bigotry, and possibly offensive statements that go far beyond the usual four, five, and six letter words I use to make emphatic points.

I cannot and will not give individual psychological, health, or medical advice and nothing in this blog should be interpreted as such. Except in very rare cases, I cannot help you develop or debug any of your own work. That’s just the way it has to be in my universe of trying to get as much done as possible while undergoing cognitive decline. I’m happy with the way I am approaching all of this.

George Huba, PhD
Chapel Hill, North Carolina, USA
April 2016

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