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social, health, political imagery through the lens of George J Huba PhD © 2012-2019

Search results for dementia

In retrospect, the most difficult time in dealing with my dementia was the first few (about three or four) years. In the beginning, the symptoms of dementia hit me like a jackhammer and everything in my life became a crisis because I did not have the skills and tools to deal constructively with my new limitations, cognitive reality, and my shrinking universe. With a lot of help from family and friends and caring agencies, I did build up skills that have permitted me to learn how to “control” my new medical reality.

I write a lot about how I dealt with the problems caused by the dementia constellation of symptoms. I live well 10 years after the recognition of my neurodegenerative disorder(s).

Here’s where I was in 2010 before I learned how to approach the control of dementia. My message now is that it is possible to learn skills and tools that can improve the quality of life with dementia.

Click on the image to expand its size.

 

There are lots of assumptions in the healthcare world. Some of the assumptions derived from the individual healthcare providers and/or their professional and accrediting agencies. Other assumptions arise from biases long-held by elected officials who must approve the use of public funds for selected services and deny them for others. Additional assumptions arise from major stakeholders in individual and corporate income and profits. Amo g the stakeholders are the pharmaceutical and healthcare supplies manufacturers (often, by the way, subsidiaries of Big Pharma companies), doctors of different specialties, insurance companies that manage healthcare facilities, and research universities that expect public sources to pay their overhead for operating the entire institution and not just the parts that cover healthcare research and medical treatment.

To develop a better healthcare system for everyone,j and in the area of dementia services where I focus my concerns, various kinds of cost-benefit studies are necessary. For instance, should dementia patients add a new, but generally unproven expensive drug to their treatment plans or instead receive a package of social services including care management, reimbursement of costs for services currently provided for free by their family members, respite services for caregivers, and patient and caregiver education. Should dementia patients get training on how to better make decisions, solve problems, and understand others better rather than some more medications purported to improve (but only slightly and only for some) their cognitive functioning.

For dementia patients, I strongly believe that cost-benefit studies need to be conducted to determine whether more cost-effective improved outcomes can be achieved with cognitive-social interventions, increased use of pharmaceuticals not fully proven to produce effects at this time, or combinations of the two.

It is very unlikely that at least within the foreseeable future there will be enough final resources to provide “perfect” treatment for each patient. Hence, it important to know the best combination of imperfect treatments that can be made available for different types of patients.

The following figure discusses some of the issues. Click on the image to expand its size.

When people look at and try to interact with people living with dementia, they often misunderstand what is being expressed. People with dementia cannot control facial muscles and may appear to be angry or disinterested even when very happy. They may talk slowly and then come out with something brilliant which you will miss if you stop them mid-sentence. They tire easily and may expression or irritation, not because of the behavior of others but just because dementia can make one very “mentally tired” in a way that I never experienced prior to dementia.

I’m there much of the time, I just don’t look the same way I used to. Be patient.

Click on the image to expand the size.

Your inner clock is extremely important. It helps you go to bed and wake up at a time that matches the rest of the world. It signals you when 15 or 60 0r 90 minutes passes. It helps you get to appointments on time or to the grocery store before it closes.

My internal clock has been broken for the past six months. It’s more of a problem than it might seem it should be.

Click on the image to follow the journey through the warped time-space continuum.

 

 

 

 

While having dementia, I realized that I could not always depend on myself to be able to remember what had happened to me over time. Symptoms? Mood? Problems? Successes?

One of the most effective ways to improve medical treatment is for the healthcare provider(s) and the patient to work as a team. Notice that one of the first things your doctor asks is “how are you?”

How you answer that question will greatly determine how much you and healthcare providers can accomplish during the appointment.

When friends ask you how are the automatic response is “fine” for most people. Same thing for when doctors ask that at the beginning of an appointment.

Let’s be real here. When you have dementia, things are not going to be fine ever again. By just replying “fine” your friend or healthcare provider might infer that you are avoiding answering honestly or even worse, they will believe that you are “fine.”.

About a year after my diagnosis 10 years ago, I stopped just answering “fine” and adopted the following response.

“For someone who has dementia, II am doing as well as anyone can realistically expect, and many times even better than that. I am eternally grateful to my doctors, family, and friends.” Or something more informal but expressing the same thoughts

Now, if you want to get the most out of your doctor’s appointment, you need to quickly, fully, and accurately tell your doctor what “fine” or “terrible” means to you..

Doctors are scientists trying to use all of their skills to determine what they can do to make your life better and more comfortable.

They need DATA. Not just data that comes back from a blood test or your blood pressure or weight but data on how your medications are working, how you get through your day with dementia, events that may have happened like a fall, and side effects you get from your medications.

I know how to deal with the need of the doctor for DATA to fine-tune your treatment. You figure out what she needs to know and you start to document what is going on.

So I started to prepare for the appointments by spending a few minutes developing a mind map that would help me remember what to say in my appointment using the mind mapping techniques I talk about in this blog. This helps me capture in more detail how the 3 or 6 months between appointments had been going. And it helped me understand how the things I did and the environments I faced determined the outcomes of my treatment.

II started collecting some data about myself and I brought some mind maps to my doctor appointments regularly. It got much easier for me to explain how I had been doing since my last appointment. How well did my medications work? Did they have side effects? How did I structure my day and how did I get along.

Several doctors saw me consulting a bright and clear mind map on my lap. In several cases, they (my neurologist and my internist) almost grabbed the display from my hands. I now have dozens of mind maps scanned into my medical chart.

The mind map below shows some of the data I collect and how I present it to my doctors.

Expand the image by clicking on it.

I’ll be creating many more blog posts on how to work with your healthcare provider and provide her with data that helps her understand what works well for you. Watch this space.

 

I made the following mind map at the end of the day yesterday to document what I had done that day. The source of information was a small notebook I carry to scribble incomplete thought during another day of living with dementia. This mind map took about 5 minutes for me to draw (I have a lot of practice) with a pen and a medium-sized page from my sketching pad.

Click on the image to expand it.

 

 

To make the ideas on the mind map identify streams of color. You can just take your map and go over it with color pens of various types. Like this …

While you see my computer-assisted mind maps on this blog site, I find the hand-drawn maps adequate for simple applications.

Try to draw a similar small map. Do you think you might remember the organized information better and encourage your mind to create associations or brainstorm new thoughts? That’s how it works for me. Using a few colored pencils makes the hand-drawn map even more useful.

When I want to capture and organize more information I use a computer program (either starting with a hand-drawn first draft) or just creating the map from scratch in a computer program.

Here is a computer-assisted map drawn from the first-draft above. It took me about 15 minutes to draw; I added a little more formatting because the map was going into a blog post rather than being just for my use. I could have drawn the computer-assisted map in 10 minutes if it was just for personal use.

Click on the image to expand it.

 

 

After you experiment for free and with materials you already have in just about every room you have in your house — and possibly already in your pocket — you might want to try to develop some maps in free programs or free demonstrations periods for more expensive programs. Programs are available for notebook computers and mobile devices. There are many apps for Macs and PC and iOs (Apple) and Android mobile devices.

I hope this post gives you a little better understanding of why I mind map with dementia to improve my ability to continue to think well. I have found over 10 years that I have been able to retain quite a bit of my cognitive functioning in spite of neurodegenerative disease.

Will this work for everyone? No. Is it worth a try? Well, it costs nothing to try as you already have that pencil and an old envelope around. And you could always work on a mind map during the television commercials instead of running to the refrigerator.

Give it a try.

Neurodegenerative conditions progressing in typical ways can cause many different type of altered psychological functioning. Psychiatric medicines may help control some of the psychological conditions caused by brain disease or create additional psychological problems as side effects.

You need to discuss psychological problems that you experience every time you see any of your medical care providers.

Psychiatric drugs used for those with neurodegenerative disorders may be prescribed differently than they are for psychiatric patients without neurodegenerative conditions. Hence if you are being prescribed psychiatric medications for a neurological condition, try to see a healthcare provider who has been trained in both neurology and psychiatry.

Click on the image to expand its size.

As soon as you are diagnosed with dementia, it is important to start to use techniques of “living smart with dementia.”

  • Time Frame: reorient yourself to the ways things are now, not what they used to be.
  • Medications: work with your doctor on drugs that can help with your symptoms and follow your doctors’ instructions.
  • Anxiety: ask your doctor for help.
  • Gratitude: Appreciate and acknowledge all those who help you.
  • Communicate: Use appropriate methods for your current cognitive strengths not necessarily the way you have done it in the past.
  • Apathy: Take steps to actively reorient yourself when you just don’t feel like doing anything.
  • Think Small: Your goal is to live well and make as few problems for others as possible. You are not going to rebuild your career or Rome. Identify what you can do and work hard to do.

The mind map below shows a synthesis of these ideas. Click on the image to expand it.

Over the weekend I did something I have not done since I retired from my job because of dementia in 2011.

I flew a round trip on airplanes including two legs in each direction and four hour connection times both outbound and inbound at the Philadelphia airport.

I flew unaccompanied.

It was a lot more difficult than when I travel with family and almost a night-and-day experience in relationship to the 20 years I flew between 100,000 and 150,000 miles each year without leaving the lower 48 states of the USA.

But I did it.

Should you be inclined to do what I did and fly unaccompanied, I have some very important pieces of advice.

  1. You cannot even try flying alone without the support and permission of your family and caregivers. Honor their wishes and judgments.
  2. You should talk to your doctor and take seriously their advice and concerns about flying. If your doctor says you cannot do it, recruit someone to go with you. Or don’t go.
  3. Do not even go on the plane alone without a LOT of preparation. This is critical.
  4. The most important thing you can take if you travel alone is a smartphone packed with lots of travel apps, and web clippings of important information like your air travel documents, key contact lists, an full itinerary, possibly a bank card integrated into your smartphone, and pictures of important information like your ID card, pill warnings, where you are going, who you are going to see, and much more. You cannot ever have too much information on a smartphone. But do make sure you can find it quickly when you need it! Note: I believe that you cannot leave your ID at home. Security checks require a physical ID card.
  5. As a rough estimate, I think that probably less than 5-10% of all people with EARLY STAGE dementia should be traveling unaccompanied. Forget traveling alone if you are in one of the advanced stages of dementia.

Here is a small mind map I made up while sitting in the Philadelphia airport a couple of days ago.

Click the image to increase the size of the mind map.

 

 

The most difficult part of the trip by myself was to get through security screening. Pray for a world where terrorism is no longer a problem.

CLICK HERE to open another window showing all of the posts to date (more than 20 are expected) in this series on The Great Visual Thinking Machine.

The Great Visual Thinking Machine is a set of visual thinking procedures that help one collect new information (especially VISUAL information), remember and recall information, and plan, schedule, and make comparative judgments.

97% of all the topics discussed within 813 posts in this blog (Hubaisms.com) since 2012 have used my evolving vision of The Great Visual Thinking Machine™ or TGVTM™.

I developed this model between 2012 and now (early 2019). During that time I have had dementia.  Think about that. Now, think about that again. None of my blog posts has been written with anyone else, edited by anyone else, or “approved” by anyone else. The key part of the blog posts — the complicated mind maps and other visual material were similarly developed by me with no directions, information, or revisions by others.

Using methods embedded as parts of The Great Visual Thinking Machine” did not keep my brain from continuing to degenerate in the frontal and temporal lobes. This is clearly demonstrated in my most recent MRI and PET scans I reviewed with my primary neurologist last week. I personally NEVER expected that using methods of thinking that were visually-oriented would either heal my brain or slow its overall physical degeneration.

But, I did hope that maybe an enhanced ability to think in an effective and accurate way using would slow the decline of my quality of life. Could I do that? I hoped for such an outcome as a result of learning and using new methods of visual thinking and I think that I achieved it FOR ME. Would this work for you? I don’t know. There have been no gold standard random assignment clinical trials. In fact, while much research needs to be done, this blog illustrates over six years that I was able to retain significant parts of my overall cognitive processing levels.

The Great Visual Thinking Machine includes cognitive and behavioral skill building, not medical, psychological, or other forms of professional treatment or therapy. Collectively the methods are super-charged ways for taking notes and comparing options The methods include encoding and decoding information in visual ways so as improve memory. These techniques can super-charge virtually all aspects of cognitive processing.

One reason I decided to make posts to the blog every few days was that I wanted to document my level of using my brain and new technologies over a period of years. I have done so and you can easily compare the results from 2012 through the present online here.

The diagram below is a depiction of The Great Visual Thinking Machine. It is written in the way that I use visual thinking methods to outline my thoughts and communicate them to others. The program used here is iMindMap, the premier way of making mind maps on computers. It is also the core of the major set of different visual thinking techniques that I use, typically in various combinations.

Click on the image to expand it.

The next mind map shows the potential users of The Great Visual Thinking Machine.

This post is the start of a series that explain how to use components of The Great Visual Thinking Machine. I expect to make a new post in this series every 1-2 days.

#TGVTM #TheGreatVisualThinkingMachine

#MindMap #VisualThinking #MindModel

tgvtm™

I have been writing a lot on this blog about apathy during the past months. It has been an increasing annoyance and in some ways debilitating symptom. Where is the off switch? I’ve been looking for it for a long time. I cannot find a personal way within my control to turn apathy on and off, even though I do cycle through periods of greater and less apathy all week, often during the same day.

Help.

A mind map shown below discusses my dilemma. Click on the image to expand it.

my brain with dementia apathy condition

 

Click here for other posts on apathy.

It’s the elephant in the room.

elephant small

Now that’s a cryptic title for a blog post, isn’t it?

When you move into later stages in dementia, there are some additional challenges to deal with.

  • Apathy (A) like you have never felt apathy before.
  • Anxiety Avoidance (A+A) where the primary experience is often trying to stay away from events, people, and situations that cause you anxiety, to a large part because the experience of anxiety gets harder and harder to cope with.
  • The Bursting Bubble (B+B) phenomenon wherein strategies you have used successfully in earlier stages of dementia to maintain quality of life no longer work so well.
  • Confusion (C) as a daily part of everything you do increases 10-fold.
  • Communication (C) becomes less automatic, more idiosyncratic to you, much harder because words disappear on the way in and on the way out, slower, ambiguous, more frustrating to you and those you are communicating with, and possibly without any memory of things you said 5 minutes, 5 hours, 5 days, or last Thanksgiving.
  • A(A+A)(B+B)CC

Sounds like a recipe for disaster to me unless you take active (and hard) steps to maintain quality of life under different conditions you have encountered before.

The following mind map shows the problems involved with moving into later stages of dementia and some solutions that might work for you. Skills and techniques you learned at early and middle stages of dementia will be helpful but not sufficient to fully deal with the continuing challenges of maintaining quality of life.

Can it be done? Yes. Is it easy without a plan? No. Does a plan help? Yes.

Here are some explanations of what might be happening to you (or an individual under your care) as dementia progresses. Click on the image to expand it.

A few solutions for each problem are also suggested. Note that these are general suggestions and NOT medical or psychological advice. For more help, see your healthcare provider(s).

The A(A+A)(B+B)CCs of Later Stages in Dementia

 

 

Want your dementia care and final life experiences to be good ones? Take a series of “final stands” where you continue to express what you want. Your friends, family members, caregivers, and healthcare providers cannot read your mind. Try to communicate with them through written words, conversations, or visual diagrams.

Before dementia becomes too advanced you need to make some decisions about how you wish to be treated as your cognitive, emotional, and social skills get worse. And you need to make sure that those who care for you, help you, and are important parts of your life know what you want.

I’ve shown a few topics you might want to consider along with your family, friends, caregivers, and healthcare providers in the mind model (map) below.

Click on the image to expand it.

Do your homework and express what you hope to experience and achieve in the final stages of your dementia. Even as dementia causes increasing problems, you can still enjoy life and lead one of high quality.

Plan, enjoy, communicate, live a high quality of end-of-life experiences, and work to achieve your goals with others. Stay as independent as you can, be nice, cooperate, negotiate, and plan.

 

by George J Huba PhD (Psychology)

Have dementia? It makes no sense to obsessively ruminate about what you have lost.

It makes a lot of sense to focus on now and then try to maximize your quality of life.

Focus not on what you lost but rather on what you have left and how to maximize how you can have the best quality of life possible. That’s how a deal with cognitive decline.

As dementia has progressed for me, apathy has become a bigger concern as the disease progresses.

Something needs to be done now? Chill dude.

Ask someone else to do something to help you? Happens more and more each day.

Just don’t care about deadlines? Yup.

You need to try to deal with apathy early and later in the course of dementia.

Apathy is a trap.

If you become apathetic, you anger your family and friends and others who can help you.

If you become apathetic, you can miss many important and enjoyable parts of life.

If you become apathetic, you can feel helpless and hopeless.

If you become apathetic, your remaining life can be depressing and limited.

If you become apathetic, your quality of life and that of your family and friends can be adversely affected.

Click the mind map below to expand its size.

dementia? now deal with ...

by George J Huba PhD (Psychologist)

Dementia is not just MEMORY LOSS. In fact, certain manifestations of dementia do not involve significant memory loss.

Virtually all forms of dementia include significant psychiatric symptoms. I certainly experience them.

If your doctor is not prescribing psychiatric medications for depression, anxiety, and anger ask why not.

If psychiatric medications you have been prescribed are not working, ask your doctor, why and if it might be useful to consult with a psychiatric medicine specialist, especially one for those with the brain changes of someone with dementia.

A mind map of some of the issues. Click the image to expand it.

Medications for Anger and Depression During Dementia

by George J Huba PhD (Psychology)

This weekend the American Psychological Association is meeting in San Francisco. While certainly not exclusively so, the meeting tends to be dedicated to the presentation of fairly trivial and limited scope, poorly designed research studies.

Psychology should be embarrassed that the focus of the meeting is not developing new and better ways of addressing psychological problems. For instance, I have dementia. So do many millions of people worldwide. At this psychological meeting, there is little focus on actually improving the lives of persons with dementia. The same is true for many other psychological disorders.

How has psychology failed persons with dementia? The following mind map presents my assessment of the situation.

Why does psychology fail persons with dementia? I believe it is because the field wants to pretend it is a science of the rigor of biology and physics, rather than focusing on becoming an evidence-based way of developing better ways of patient assessment, screening, treatment, and communication. What a waste. And remember that I am a person with degenerative cognitive and behavioral disease and I get it. Shame on psychology.

Click the image to expand it.

By George J Huba PhD (Psychology)

Several times over the past six years, I have written similar posts suggesting strategies for minimizing the symptoms of dementia.

This is my current scorecard and suggestions about how to deal with the symptoms of the disease.

This is a totally new effort (I did not go back and look at the prior posts on this topic). If you want to know what I felt about my own dementia at various times since 2012, you can go back and look at my prior posts. To do so, on the left of any of my blog pages you can click on the month and year and see all of the posts from that time period. Alternately, in the search box, you can type in some keywords and see a chronologically-ordered list of my posts on that topic.

Here is a mind map of some strategies for minimizing the symptoms and effects of your dementia (or that of a person with dementia under your care).

Click on the image to expand it.

 

 

#dementia #MindMap @DrHubaEvaluator #GeorgeHuba

 

 

by George J Huba PhD (Psychology)

Dementia is a time that gets extremely complicated for a person with dementia and their spouse, family, friends, new social acquaintances, healthcare providers, and caregivers.

Probably the biggest issue is that those who interact with the person with dementia expect the PWD to communicate in a way that is diminished but still like the way a typical person without dementia communicates just now at a lower level.

It is difficult to communicate with a person with dementia because their own experience of communications is now shaped by the brain changes and other symptoms of dementia. What about your Mom who no longer smiles when you say something she has always liked or when you bring her the pistachio ice cream she has always loved? Ever consider the possibility that she thinks she is smiling but has no control over nonverbal communication such as her smile. Brain damage of various types can cause the loss of nonverbal communication abilities or control of facial muscles.

Why does your friend always get overwhelmed and say something stupid when there are lots of other people around? Perhaps they can’t focus on what you are saying because there is so much noise and motion from distracting sources?

Ever wonder why your friend with dementia comes back with an answer to a question five minutes after you asked the question? Brain changes and damage during dementia may make it hard to retrieve information or think and a loss of a sense of time may mean your friend keeps working on answering the question long after the conversation has moved on.

In dementia, a daydream may be as vivid as something in the real world, and just as distracting. In dementia, you can’t deal with too much information because it distracts you and can’t “fill in the blank spaces” if you receive too little because your “executive functioning” has been destroyed. You tend to get anxious during a conversation not only from unpleasant topics but also from worrying so much about missing a word or forgetting a name or misinterpreting a suggestion as hostile when it was just a normal joke.

The physical and psychological consequences of dementia combine to make it seem that a person with dementia is speaking a different language. They are.

And yes, those 20 or more pills the person with dementia may take daily can affect the ability to speak clearly, pay attention, be sleepy, look like they are bored when they are not, or become even more anxious.

Additional thoughts are arranged on the mind map below.

Click on the image to expand it.

Always try to remember that the person with dementia is often not disinterested or misunderstanding you or too tired to think or extremely distracted in what you think is a peaceful environment.

And if you are a person with dementia, remember that your friend is not trying to mislead you or express hostility and disapproval. They are not trying to trick you or harm you or pick a fight. You might not remember a conversation your caregiver says you had 10 minutes ago, so get over it and trust the other person. Nobody is criticizing you as a person because you can no longer tie your shoelaces or your necktie.

All parties in a conversation with a person who has dementia need to realize that the “rules” for the social encounter have changed because of the disease. Both persons with dementia and their families and friends and caregivers need to realize that is just as hard for all parties to figure out this new “language of dementia.” But it can be done and when mastered can liberate everyone to some degree.

Learn to laugh and smile and enjoy the company of each other again. The positive emotions are still there but they may have to be expressed in different ways. Learn how to express oneself when one or more parties has dementia. It’s worth the time. For everyone.

 

what makes conversation difficult for a person with dementia

 

#mindmap #mindmapping #dementia #Alzheimers @DrHubaEvaluator

By George J Huba PhD (Psychology)

After working hard (or some would say, “struggling) to continue having a good life with dementia, many (including me) find they must eventually come to the final obstacle of almost debilitating apathy and hurdle over it. It is very hard to commit the energy and time to fight back against the apathy which naturally results from knowing you will have to keep working so hard at fighting back for the rest of your life.

Take a deep breath. You can do it and then do it again tomorrow. Do remember that all of us who deal with dementia face the same general set of obstacles every day. And maintaining a “normal” or typical lifestyle is well worth it.

A mind map showing the major issues. Click on the image to expand its size.

Dementia Hurdle

Having dementia is, OBVIOUSLY, not a lot of fun. You feel bad mentally and physically and tired after just a little physical or mental activity. A couple of weeks ago when I had a six-hour professional meeting with two other people I went home and immediately went to sleep for 14 hours.

When you have dementia, it takes a lot of energy to just get through a day and figure out what you can do and how to do it. I have trouble with buttons so I find that I am leaving my preferred “office” shirts buttoned and just pull them over my head. I go to the trouble because wearing a dress shirt during the day — albeit without a tie and with the sleeves rolled up — makes me feel better.

Social interactions are among the most difficult things I have to deal with during the day. They are also the most upsetting to other people because they can see my vulnerabilities at the same time I may annoy the heck out of them.

So, one thing I try to do is to follow the 10 courses of action listed in the mind map below. I have increasing dementia after all so no matter how hard I try I doubt I get more than 80% of these things right. But by trying hard, my efforts are appreciated and reinforced by those family members, service providers, and others who have to deal with me when I am at my most stressed and tired and grouchy. And the fact I am trying lowers their stress.

Just because you have dementia, you are not excused from trying or being nice or appreciating others.

Click on the image below to increase its size.

 

Being the Best You Can Be with Dementia