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In the prior post, I discussed the concept of cognitive reserve in dementia. Much research is currently being conducted on building cognitive reserve and how it is used by the brain during its deterioration. Much additional work is going into identifying the activities that may be most helpful for building cognitive reserve.

Cognitive reserve refers to the fact that through the proper educational channels and activities, we can learn to solve many problems related to our behavior, cognitive functioning, and general well being. The brain is quite good at dealing with alternate strategies and coding them for future use if there are multiple channels (visual, auditory, etc.) of information. By learning to approach the same problem from different directions (through brain pathways), we develop redundant strategies for doing the same thing (such as remembering a name that has been associated with a face, an organization, a geographical area, an age group, and gender, to name a few).

The more instances and types of alternate processing strategies the brain learns, the more it can withstand a disease or trauma to the brain. If one set of brain cells (or a neural pathway) are disrupted because of cell damage, the brain may be able to “re-route” the neurological signals and use an alternate way of performing the same function.

Cognitive reserve accumulates through varied educational and life experiences that require the active solving of new problems and the assimilation of new information. The prior post discusses this idea in more detail.

I created the following diagram to explain how the theory of cognitive reserve could explain why four different types of people have somewhat different experiences with dementia.

The vertical axis (up-down) represents the ability of an individual to perform typical cognitive tasks that a person with severe dementia cannot perform. The horizontal axis (left-right) indicates the degree to which the brain is damaged at different stages of deterioration in ways that can impair and preclude the performance of necessary cognitive tasks.

Look at the four curves representing hypothetical individuals or groups. The first purple curve is for a typical person who has sought out educational experiences for jobs and day-to-day life skills. With no brain damage, the individual  can be productive and accomplish all of the normal functions to have a happy, productive, and self-sufficient life. When this person develops a brain condition, decline starts and is fairly consistent in its drop relative to the amount of brain damage. There is no brain reserve and hence no compensatory “wiring” in the brain that can substitute for cells that die.

The second condition (teal curve) is a person with the the same starting level of functioning. As the brain initially declines, they decline a little in their cognitive processing but can start to hold onto their remaining cognitive power for a while by implementing an active and consistent brain education exercise program which builds up a supply of cognitive reserve that can initially help slow rates of decline until the reserve is “used up” and then they decline into full dementia.

The third curve (blue) represents an individual who has consistently exercised their brain throughout their life and sought out opportunities and experiences thus building up a cognitive reserve. After brain deterioration progresses, at some point, the individual no longer maintains an effective brain exercise program and the disease progresses fairly rapidly into full dementia symptoms.

The fourth curve (orange) represents an individual who as been a life time learner, experience seeker, and problem solver. The individual maintains an active brain exercise program which is as intense as possible for as long as possible. The decline into full dementia systems comes later and will occur fairly rapidly.

Are the exact rates at which an individual’s cognitive processing will fall depending upon their lifetime and current brain exercise programs known? Not really. Lots more research is needed. However scanty, the available present research done on thousands of individuals does support the categorization of four types of individuals as shown in the diagram.

What does this all mean. Quite simply, if you develop an active style of learning and follow it diligently throughout your entire lifetime, when a certain level of brain damage occurs, you brain may be able to automatically readjust because of its cognitive reserve (it’s magical bag of brain tricks to use when part of the brain is injured) and it may not seem as if any brain disease is present until quite of brain damage has cumulatively occurred.

Exercise your brain. It can be fun stuff (inventing new recipes, learning how to play soccer, studying the harpsichord, determining how Henry the VIII treated each of his six wives and subsequently his actions changed religious and government processes into the present time. Learn a computer language or how to draw comic strips or the technical theory of photography. You can go back to school and take adult enrichment courses or you can discover new ways of doing things yourself. The condition is that the experience needs to encourage active learning and one you will get engrossed in and consistently do. Learn everything there is to know about Beethoven’s symphonies and go and see several different orchestras perform the same symphony so that you can learn the wide range of ways musicians and conductors interpret Beethoven’s work. Exercise your brain. Fit into the pattern depicted by the orange line.

Note that you do not need to take a fancy brain development course or buy a fancy brain training program. The research seems to indicate that few if any of the commercial (expensive) courses-programs are as effective as free learning activities you can come up with and manage for yourself such as going to a museum or a free concert series or visiting a new place or studying something you have wanted to know about for years. Learn harpsichord, trombone, or oboe. Learn why there are dozens of regional cuisines in France and which you like best when you sample them and try to recreate the dishes  in your own kitchen. It shouldn’t matter much if the activity is an individual one or that done as a group so long as you actively participate.

Building cognitive reserve can be quite fun. And a great way to have more high quality time with others or pursuing your continuing educational experiences.

2016_06_23_10_18_08The following Mind Model (Mind Map) is from the prior post. It explains the term cognitive reserve and a number of factors in its formation and usage when the brain is damaged.

Click here to see the prior post on Cognitive Reserve and Mind Modeling/Mapping in its entirety including a comprehensive discussion of this important attribute of the brain. The linked post will open in a new window.

Click the image below to expand it.

Theory of How Visual Thinking [MindModeling aka MindMapping] Helps Build Cognitive Reserve

 

 

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One of the most valuable — if not the most valuable — neurological constructs recently introduced and the focus of much research is that of cognitive reserve. Although the idea of cognitive reserve has been around for more than 125 years, it first became important as a research topic with huge clinical implications for dementia services and prevention about 20 years ago.

The basic concept of cognitive reserve is the old adage “use it or lose it.”

Eeeecccchhhh. (Not that one again.)

Brain reserve can perhaps better described as …

“If you use it (the brain) in such a way as to expand the brain’s pathways by learning new things (everything from playing a musical instrument to intricate dancing to painting to exploring the world to exercising regularly to learning how to mind map and organize all of the new information you probably will find that if your brain is damaged by disease or trauma you may not have as severe symptoms of dementia as someone who has not used their brain fully.”

Expand all of the things your brain can do and if brain disease or a car hits you, it will be more likely that some of the expanded functions your brain can continue to handle will help you continue to maintain your quality of life for a longer period than if you had not done the “brain exercise” to expand the many functions of your brain. Go get a trombone or ballet slippers or some art supplies and have fun and exercise your brain at the same time. Try out the visual thinking methods I advocate and then master them. Learn to hit a 3-pointer as consistently as Steph Curry. Learn a computer coding language. Learn to be a gourmet cook and expand the ability of your taste buds to discriminate between Italian regional cuisines. Spend a few days in an art museum sketching some of the famous (or not so famous) paintings and see if you can learn different techniques from different artists by sketching their work.

I focus on visual thinking tools in my writing because there have been a number of demonstrations — although no real empirical studies that meet professional standards — that expanding one’s ability to think visually has some huge benefits for the workings of the brain. It is very clear that the educational systems of the world in modern times have not emphasized visual skills. In fact, visual thinking skills such as daydreaming, doodling, annotating notes with pictures, and understanding how the pictures capture important ideas that go together and form larger hierarchical “mind maps” were actively discouraged. I recopied my college calculus notes because a prof I had hassled me in class about my doodling in the margins (and yes these were my attempts to visualize the equations, not home-made versions of Doonesbury. Throughout my elementary, junior high school, and high school years students in classrooms were criticized (and sometimes also struck with a metal ruler) when they daydreamed.

If those of us who are older can increase our visual thinking skills, it is quite possible that your brain reserve will be larger when you have to face a brain disease, and that some of the dementia symptoms from the disease will be delayed (in relationship to the amount of brain damage) for quite a long time or at least make their severity seem less until the reserve is “used up” and no longer can the long lasting results from “brain exercising” — a large brain reserve — help to fight against a severe level of damage to the brain.

Can you build up a cognitive reserve by shifting to such techniques as mind modeling (aka mind mapping) or sketchnoting or many other visual techniques? I think that my development of a big cognitive reserve from using the techniques I demonstrate in this blog have helped me maintain quality of life.

I think results such as mine are explained by the emerging wide research on cognitive reserve. I am hopeful that sometime soon one of the research leaders will turn her attention to studying mind mapping or doodling and daydreaming to determine how much these techniques can build later (and current) cognitive reserve.

Here are my thoughts on visual thinking and cognitive reserve expressed in my usual mind model (a form of advanced thinking I still can do with dementia even when I have difficulty buttoning my shirt). Click on the image to expand it.

Whether you agree with me on the usefulness of visual thinking tools or not, go out and find something new to learn. Everyone in the world has some brain expanding things they would like to learn. Follow yours and it may help you if you encounter brain conditions much later or tomorrow. The worse that could happen is that you will have had fun and can now play a trombone.

Click on the image to expand it.

Theory of How Visual Thinking [MindModeling aka MindMapping] Helps Build Cognitive Reserve

 

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

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

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

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

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

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

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

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

 

 

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The elephants are always in the room, in the form of the unusual constructs and ways to cope that people develop as their brains are altered through degeneration. Something for a caregiver or family member to recoil from and act shocked and broken-hearted? Not at all. Rejoice that people can live very well for a very long time as their brains rewire themselves and cope with the big elephants running around inside their heads. And that with needed support from family members, friends, healthcare professionals, and the community, the elephants won’t stampede and “normal” life can be approximated and enjoyed at least part of the time.

A MindModel (aka MindMap). Click the image to expand it.

The Elephants in the Brains of People with Dementia


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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 usually advocate in this blog for using Mind Maps (or my content-centered version I call Mind Models) to have the benefits of visual thinking available to all, including those persons with neurocognitive problems.

If you read the blog, you know that I am using visual thinking methods in my own journey through cognitive decline.

I find that a lot of people are very interested in mind mapping but may not want to make a full investment in using a full-blown mind mapping program.

The alternative that most use is to draw simple diagrams on a pad with a pencil or pen. Many of these diagrams look like spider webs more than mind maps, but this does not bother me at all. Simple quick diagrams are much better than no diagrams and you can get a significant amount of improvement in thinking — especially as your cognitive abilities decline typically with age or more rapidly with neurocognitive disorders.

I have written before about a simple little program named Instaviz (based on one of the most sophisticated mathematical algorithms for automatic diagram creation ever developed). The Instaviz story is a pretty interesting one. Click here to read the prior post in a separate window.

Because Instaviz is such a simple program to use but can create some extremely useful, simple to update, gorgeous diagrams just by drawing some circles and squares with labels on the screen of an iPad or iPhone and then drawing arrows to connect them, the easiest way to “get” why and how the program is useful is better illustrated with a video than a longer discussion.

Watch this video by the developer. In 2 minutes, 21 seconds, you should be able to see why this program produces such useful diagrams in a way that almost exactly mimics the way you probably draw diagrams on a notepad or on the back of a napkin at lunch.

Here are some examples of my use of Instavi. These are not dementia-specific examples, but rather simple diagrams that document my life and ideas and my vacation preferences. All in nice looking diagrams that most people intuitively understand and that can be read (unlike all of the napkins with poor handwriting on porous paper and glass rings muddling it all up) 10 minutes after they are drawn.

You can use Instaviz to quickly draw simplified versions of many of the mind maps I use for managing dementia. Yes, you will lose some of the effects of full-blown mind maps, but Instaviz may be a very good solution for many as the iPad permits such diagrams to be created from simple finger or stylus drawn input.

These diagrams literally take just a few minutes to develop. You just input the information, the program decides where to put the squares and circles and arrows so that diagram will be maximally clear. (Again, refer to the developer’s video.) Done.

To modify the diagrams you just add other squares and circles or erase some, and the diagram automatically (within an eyeblink) redraws itself to achieve maximum readability. Graphics magic to help you think much better, whether you are building diagrams to enhance your memory or to help you decide whether to watch a football game or a cooking show on TV (ok, ok … I know you don’t need a diagram for that but it could help you explain your decision to your spouse or probably not).

Each of these diagrams took me just a few minutes to develop most of which was spent on doing a little more formatting than the very good defaults for the program so that I could show you how good these diagrams can get after a couple minutes of making some artistic decisions.

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How much do I life this program for basic visual thinking? Enough so that if I did not have an iPad on which to run it, I would buy a basic iPad just to use this app. Really. The app makes the iPad a must-have device if you like to hand draft visual diagrams whether for final use or as early drafts for enhancement in a more “artistic” mind mapping program. The Instaviz app is currently (June 2016) priced under $8 US.

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Doodling can be a very powerful tool for visual thinking for most people including those with dementia (neurocognitive disorder), typical aging, or mild cognitive impairment.

Doodles do not need to be art and in fact typically will not be even if you are artistically inclined since you primarily want to go fast and get ideas down.

Color is a very good feature as is outlined lettering colored in. And I am pretty convinced that this is productive for people in early and middle stages of dementia although there is no scientific literature that I am aware of that has formally studied this.

To also see the previous post on doodling, adult coloring books, imaginative drawing, and mind mapping, click here. The earlier post appears in a new window.

Click on the image (MindModel AKA MindMap) to expand it.

Why Do I Doodle (with  Neurocognitive Disorder)  Summer 2016

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There are many visual thinking tools that may help maintain cognitive functioning during the course of aging. Even simple adult coloring books — the current rage, soon to pass — can help one move into a positive and creative state.

Why not go to explore imaginative drawing, doodling, and mind mapping, each of which adds tools to the lower levels in an attempt to teach the brain how to use structured visual thinking to organize information and remember it, plan, make decisions, and maintain at least semi-independence as cognitive decline progresses and dementia may emerge.

The following mind model gives a few of my thoughts on the psychology of all of this and the benefits that accrue in progressing from one level to the next.

What do you think?

Click on the image to expand it.

Adult Coloring Books & Imaginative Drawing & Doodling & MindModeling & Aging

I am an American taxpayer which means that I help support a very large percentage of all funded medical research in the world as well as important global healthcare agencies like WHO. I see such research as a global priority and gladly see the US stop building weapons and acting like the police force for the world and redirect our defense budget to even more research and human services.

I have a neurodegenerative disease. I am a trained scientist. I am 100% disabled and do not work. I participate in the global healthcare research and healthcare training network through this blog and Twitter. I am not compensated for my work on the blog and in other forms of social media. My work is influential.

I often consult, retweet, summarize, and evaluate published peer-reviewed articles on topics with relevance to neurodegenerative disease. After finding what appear to be very important articles and reading the free abstracts, if I want to then go on and read the full 10-20 pages about how the study was really conducted and which research it builds upon, I often (>50% of the time) get a message stating that I will have to pay between $10 and $100 to read a copy of that paper.

Note the following. I have neurodegenerative disease. I have 35 years of professional experience and some of the finest training available in psychology and healthcare. Until retirement I held a license in psychology where I specialized in healthcare for more than two decades. I can still read highly technical articles and translate them into language and observations someone without professional training can understand. More than 1000 mind maps and other diagrams in my blog posts demonstrate my ability to do so.

But I cannot afford to pay between $10 and $100 to look at a published paper. Can you? In most cases, my tax dollars and yours paid for the research being described but I am denied access to examine the product created using my tax dollars and yours.

You ask, how can academics afford to pay for reading published articles? The simple answer is that they don’t pay for their access, taxpayers do, either through taxes supporting research grants and university libraries that can be accessed free by academic researchers or by donations to nonprofit agencies that support medical research and libraries.

You have the disease. You want to read the research being done on your disease to find out if there are things being discovered that can help you now.

Dementia patients should have access to dementia research articles without cost. After all, they are the individuals who are studied.

Cancer patients should have access to cancer research articles without cost. After all, they are the individuals who are studied.

I could go on all day, but you get it.

As an American citizen, I own my medical records for services provided in the United States. Why don’t I own the right to read reports that are published from my medical records or my participation in research without being charged a fee?

There are many research journals that use a new model called open access meaning that their articles can be read by anyone for free and that the authors (more accurately their research grants or institutional funds) pay for the cost of independent peer review and posting the article on the Internet. But, the oldest and most prestigious medical and healthcare journals are for-profit operations whether owned by a private publisher or by a professional association such as the American Medical Association, the American Psychiatric Association, and the American Psychological Association. So in most cases, I cannot access the highest quality research on my medical conditions for free. Authors (and peer reviewers) receive no royalties for publishing journal articles.

If patients refused to participate in 10 research studies or even just delayed them for a few months, it is pretty clear that public opinion and elected officials would quickly demand that articles written from the data collected from individuals with a disease be made available to everyone without cost.

Patient-centered participatory care requires that patients have full access to all of the information available about their conditions if they wish to consult it. Charging between $10 and $100 for a single research article prevents most patients from being able to access those very articles that could not have been written with the participation of patient with their conditions in studies that boost professional academic careers and provide profits for publishers.

The situation would abruptly change if patients needed for research studies were to say, “no free access to public research about my medical condition; no participation in further studies of my condition.”

“free access to medical information for all
over medical publisher profits”

Every condition, every publication, 24/7.

George J Huba, PhD
Retired Psychologist and Active Healthcare/Dementia Blogger
Chapel Hill, NC
June 2016

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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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My computer assisted mind maps look pretty nice and slick and fancy. So do those of many others who can use computer programs for mind mapping at a high level after practicing.

But do you need to be a computer nerd to make mind maps that are USEFUL for you and others? To make mind maps of your activities, likes, dislikes, calendar, plans, achievements, what you need to do, and what you want to do?

Naaahhhh… Just get out a few pieces of paper and a pen or pencil or three. It may not be a work of art but the map will help you and others learn, remember, plan, and share.

It is no more difficult than this. You don’t have to be an artist.

Click on the image to expand it.

This is what I did today. Not too bad for a guy trying to live semi-independently with dementia. I hope your day was a good as mine. With this simplistic little map in tow, I have a good chance of remembering the great things that happened today several weeks from now.

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Anxiety if a huge issue for people with dementia. My observations of why this occurs — based on my own experiences — is shown in the MindModel™ [ AKA MindMap] below.

Click on the image to expand it.

PWDs [Persons with Dementia] Experience Huge Amounts of Anxiety Here's Why

 

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Wonder what the difference is between a Huba-style MindModel™ and a Buzan-style MindMap is and why the MindModel is much more effective? Click here to find out.

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.]