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.
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.
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.
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.
Think about entering the healthcare system as a patient. You get handed 5 pages of tiny font sheets to fill in with your address, person paying the bills, the medical history of yourself and two generations back every time you go in, You scribble out answers into tiny boxes and hand the forms back. Then they give you 3 small-font pages of legal disclaimers and conditions to read and approve.
Next a nurse takes you aside for a blood pressure reading, a weight assessment, and various other information. He scribbles all of the resuolts into a chart.
Next up the doctor enters. She scans all of the paper you filled out and what the nurse wrote down, and then starts asking you questions in a shotgun approach. When you comment that the answer is still what you wrote down 5 minutes earlier, she is not impressed.
Later the doctor gives you instructions. She goes fast but alo types the suggestions into an EMR (electronic medical record). You may lose the form (common with the cognitive diagnoses I have), not understand everything in the report, and not be able to read 2 point text. but at least you can recover what she wrote.
Don’t they always say a picture is worth 1,000 words? Don’t most people agree with that statement?
For the current aging birth cohort (boomers), images are a way of life. Photos were available when we were born and financially accessible to most by the mid-1960s. The number of pictures increased in newspapers and later on the Internet over the past 50 years. Immediate images and videos from the ubiquitous smartphones have been available to the majority of world-wide families for the past 5 years.
Home black and white television sets became very common in the 1950s and color televisions in the late 1960s.. By the 1990 many US homes had more than one television set. In the 2000s screen (flat panel) sizes at least doubled in size in most homes. 700 channels and 3 TV sets and and nothing on.
We all use images constantly and reading text is going down. We primarily get our news from pictures on the Internet, in print media, and shared with friends or on social media. Pictures are used to influence our attitudes, behaviors, preferences, and to sell us products.
I have been working hard at creating and using images in my own healthcare for the past 9 years after I was diagnosed with a progressive neurocognitive disorder.
About six months ago I had a PET scan of my brain as well as my fourth MRI since 2010. I now have two neurologists. The secondary one (a cognitive neurologist who ordered the scans) emailed me a one page written report wit the results. No images were shown on that report. At my following appointment she discussed the report with me. She commented that there were no images to see. I then asked her if she was going to correct the conceptual typo in the report. In the first summary paragraph of the report it said that my PET scan was normal; the remaining two-thirds of the report gave numbers that indicated portions of my brain were not functioning well. Then the first paragraph was repeated at the end but this time the summary was identical in all but one word which said that my scans indicated significant problems. The doctor sent an email to medical transcription while I was there pointing out the problem.
I asked to see the scan and was told that there was nothing for me to see. I was more than a little surprised by that (well a lot surprised!). I had thought that it would be cool to see which parts of my brain were goners and which were lighting up.
A month later I saw my primary neurologist who has been in charge of my care for more than 9 years. I asked her if she had read the report on my PET scan and last MRI. I explained that I was really surprised that the other neurologist told me that there was nothing for me to see. So she then went to her large clinical display, called up my file and showed me sequential MRI and PET scans. It was pretty easy to see changes in my brain over time. Nice pictures, too. I learned a lot about my treatment and disease progression over time.
A picture is worth 10,000 words. Five scans over 10 years is a treasure trove.
Visual patient-provider information exchanges can be aided by images. Self management and that by a caretaker can be aided by images. Memory can be enhanced with images. An understanding of the problem may be more easily achieved by family members and the patient when supported by images. This is a win-win-win-win situation.
The system I used for creating images to manage information allows me to manage myself better, relieve stress I put on caregivers, understand medical research better, and communicate with my doctors clearly. It primarily uses mind maps. Both neurologists have concluded that I use my techniques to compensate for some of my neurological (brain functioning) problems.
There are about 700 posts on this web site about issues in using mind maps, how to do it, my experiences, and “real” examples of using visual thinking methods as my cognitive functioning declined.
Oh … It should be noted I estimate that using visual methods of processing medical information for ONE YEAR are very inexpensive in comparison to ONE Emergency Room visit, ONE primary health care visit, ONE week of a patient’s period of acceptable cognitive functioning, ONE day of wasted homecare, ONE day out of work for a family caregiver. Now let’s multiply that by the number of Americans receiving healthcare through self pay or public insurance programs (Medicaid, Medicare, others) or private company managed health insurers.
Here’s another mind map about how the healthcare system might be made better (and less expensive) by incorporating health care information into mind maps and passing them around among patients, caregivers, family members, friends, physicians, nurses, and other healthcare professionals.
The title of this post is the #1 question (comment) I receive on Twitter when I make a post about content on this site.
The answer to the question is a guarded yes. Most (in excess of 85%) cover basic issues in caregiving, healthcare, patient management, note-taking, self description, cognitive issues, case management, family management, and resources within the healthcare system. Some is specific to dementia (mind maps on types, treatments, research, experiences of those with dementia).
My expertise, research and personal interests, and personal theories derive from within the context of dementia in terms of my professional interests, experience as a caregiver for my mother and grandfather, research, test development and personal experiences. So I always present my ideas targeted toward persons living with dementia, their caregivers and medical providers, dementia care/case managers, and those adults concerned with improving and or maintaining their own cognitive skills or preparing for cognitive decline.
There are many applications of my ideas to many chronic and acute healthcare conditions. Caregiving issues are in many cases the same, healthcare management of different conditions may be fairly similar, and nobody has enough resources to do what they actually want to do.
Where I have great reservations in applying (or extending) my ideas about cognitive skills and quality of life is in understanding and intervening in cognitive and the other medical, and mental health issues of children and adolescents. ADHD, adolescent suicide prevention, youthful problem behaviors, dyslexia, and many other conditions require very specialized professional training. Caregiving by family members and paid trained-paid caregivers often requires different skills, knowledge, and emotional supports than it may for adult patients. While many trivialize the issues and state that declining older adults are like children, such a statement makes minimizes (in a way both pathetic and potentially dangers) the very real and large differences in the care of these groups at either end of the age spectrum.
NO posts or mind models in this blog are specialized for the very real unique needs of children, adolescents, and sometimes younger adults.
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.
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.
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.
A related posting on caregiving may be accessed by clicking here.
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.
For a related post on caregiving (opens in separate window), click here.
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.
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.
[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 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 boring professional journals in paper formats anymore), 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 (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 be 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 a 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 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.
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.
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.
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.
The following mind map shows and explains four types of apathy that I would differentiate. Click on the diagram to expand it.
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.
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.
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.
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.
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.
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.
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
Caregivers may find that visual information recorded in mind maps provides a good way for the caregiver and the client to start discussions.
Caregivers may find that clients can express themselves better with pictures, drawings, doodles than in words.
Caregivers may find that their own notes from each day are more useful if captured in the format of mind maps.
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.
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.
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.
Preparing a Mind Map (with the help of the client or family members) of the Client’s Religious Beliefs.
Preparing a Mind Map (with the help of the client or family members) of Things the Client Especially Enjoys.
Preparing Mind Maps from the Warning Brochure that Comes with Each Prescription Refill.
Preparing a Mind Map of Each Day for Your Use and That of the Client.
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.
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.
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.
The focus of the blog is on the issues shown below. If you click on the image, it will expand.
The response to the pandemic was botched in just about every way imaginable by the national, state and territory, and government agencies.
If there was a way to make things worse one or the other political party espoused it.
Covid was turned political as was mask-wearing and social distancing.
Half of America wanted to sit inside isolating themselves and working at home why still earning their salaries. Once in a while, they would come out to protest the lack of civil rights and related issues. They would wear masks and preach to non-mask wearers. And then go order online meals from restaurants and goods from Amazon. Having kids at home rather than in school or daycare became a major hassle because parents were trying hard to work at home. When distressed they could talk on video chats with their friends and families on their i-devices with fast Internet connections.
The other half wanted to go to restaurants, go to bars, go to grandmother’s house, and go to work, too. Many were unemployed and given insufficient emergency unemployment benefits and they wanted jobs not just for money but also for the social support from their work friends and the sense of belonging and self-worth a job provides. Many could not afford food and rent. On top of all of these stressors, it seemed hopeless because their major sources of emotional support were their family and friends and isolation meant they could not get necessary advice, counseling, and assistance from families and friends and those invaluable hugs from their family members. They had to deal with all of the issues associated with being poor (many for the first time) in the world’s richest country.
They fought over who would lead the country, whether those in-need should be represented by politicians from one of the two groups, who had access to what, whether taxes should pay for sufficient amounts of different types of services for those in need, and just about everything else.
The outcome of fighting and feeling bad and being angry and having to wait in food lines and having to provide homeschooling to their kids and worrying about their retirement and facing eviction and being unable to talk intimately with friends and family face-to-face clobbered the American people in both groups. In response they clobbered each other.
The outcome was inevitable.
Every little bit of time wearing masks will help you and me and our neighbors. Every little bit of aid to pay for food and housing and security will help you and me and our neighbors. Excusing medical expenses (through government payment) will help you and me and our neighbors. And the list goes and on. For each and every service there are direct and indirect ways that the service will help you and me and our neighbors.
We need to get our act together as a nation and as individuals. There is not a lot of time left. And if you think that vaccines are going to save us from our disorganization and hopelessness and hostility and stubborn behavior, you are deluding yourself. Full vaccine coverage will not come about until the beginning of 2022 or later and may never if a substantial percentage of Americans refuse to accept vaccination.
We are failing ourselves and our neighbors.
Time is running out. But we can still help you and me and our neighbors and maybe the rest of the world.
No covid vaccine yet. Even if one were to be fully tested and proven safe and effective tomorrow, you probably could not get a shot until 6-9 months later.
Mask use seems to be topping out at around 70% in the United States and even conscientious mask wearer and social distancers are getting pandemic fatigue and less conscientious about always using protective behaviors.
The USA is not using behavior change and social support methods to help deal with unhealthy and potentially virus-spreading behaviors.
Instead of promising a vaccine and telling me to wear a mask, how about some social support methods to help with people feeling the depression and anxiety and hopelessness and fatigue and loneliness that comes during a pandemic. Most Americans could use some support in dealing with the balance between working and providing childcare/homeschooling. Or the frustration of being alone at Thanksgiving.
How about promoting behavior change and showing people how to get a mask to fit comfortably and correctly, or showing people how to judge they are six feet away from others. How about getting cigarette smokers to stand 12 feet away from others as they do the huffing and puffing thing in service to nicotine addiction.
A lot of people would benefit from counseling and group support-self help groups during a pandemic.
Many need a case manager to help them get food or a place to live or a job or child care or eviction or mortgage default. Others may need a legal counselor to help deal with problems incurred because of wholesale job loss and the resultant loss of life savings.
To stop the spread of COVID-19 you cannot just tell someone to wear a mask or not go to a family member for support.
What you need to do is to help individuals with pandemic fatigue and other problems find ways to constructively deal with the pandemic and get help from public sources.
Fortunately, most of the social services needed to help many people deal better with the pandemic can be provided by trained mental health and healthcare professionals and their assistants. When provided by telephone or video sessions or online support groups and counseling or specific advice to someone getting evicted these services are much less expensive than treating someone in the hospital or outpatient clinic who has become infected with COVID-19. And of course, every person who gets COVID-19 can potentially die or be affected by lingering symptoms for the rest of their lives, and the cost of any life or development of a lifetime disability is one we should try to avoid as completely as possible.
If we want to cut the levels of COVID-19 we need to up the prevention, support, and behavior change services we provide.
Click on the mind map to expand it and look at the issues in providing behavioral and support services that could make it easier for people to avoid dangerous behaviors that spread the disease.
Every time I think Trump cannot exceed himself in stupidity, meanness, cruelty, sadism, and lying, he comes roaring back and gets stupider, meaner, crueler, more sadistic, and more dishonest.
Trump’s adoption of a herd immunity model is being widely criticized by virtually every infectious disease expert who comments in television and print interviews. Virtually everyone predicts a number between 2 million and 6 million deaths from the strategy.
Herd immunity is social Darwinism, a policy adopted by many totalitarian governments.The “strongest” win, the “weakest” disappear into the trash can of of history. Social Darwinism is the antithesis of the American traditions I learned as a child from adults and religion.
I just lived for the past six months in “stay-at-home” conditions because of the COVID pandemic. I also am living with dementia and my residence is a health-care living complex regulated by the State of North Carolina.
As usual, I developed a mind map over the past few weeks to summarize what the issues were (are) in dealing with both of these “problems” at the same time.
Most of the information is best explained by the mind map below because it shows, in a summary fashion, what it meant to deal with the pandemic. Here are some bullets to cover things.
The condominium building I live within has 18 units with either or two occupants. There is a trash pickup a few times per day. The units each have one or two bedrooms and several bathrooms, a small kitchen, a living room, and a very large number of windows in units.
During the last six months, everyone was in a quasi-lockdown condition with residents asked to not leave the large campus with lots of green space and several dozen buildings and about 50 single or duplex homes. No visitors were allowed inside buildings and the social interactions I had were with family members sitting on chairs I would bring downstairs to the grass where we would sit 12-20 feet apart, eat bag lunches together, talk.
Most weeks residents were encouraged to stay in their units and to only go out to get the mail or exercise in a socially distanced way. One meal per day per resident usually served in a communal dining room was delivered to each of the homes. Most of the time residents used grocery delivery services and online stores like Amazon. Most prescriptions were delivered by mail or picked up at a local pharmacy where you could call and pay and they would set your prescriptions outside when you arrived for you to pick up.
The complex of about 400 persons has had no cases of coronavirus among residents and five cases among staff members. A related small residential intensive medical building has had two positive cases of coronavirus.
Within my building, I am the youngest resident (at 69) and most of the other residents are in their late 70s or 80s with all still fairly mobile. I have not talked for more than 5 minutes to other residents in a day. One thing that I have observed is that most of my fellow residents cannot maintain social distancing because of cognitive difficulties or lifestyle issues like their cultural norms, poor hearing, and loneliness.
I have also observed that I am probably the only resident of my building taking advantage of bringing chairs out to the lawn and sitting far apart from 1-2 visitors at a time.
I often (more than half of the time) do not formally see other people in a day; our interactions are limited to my identifying them from the door peephole and conversations through an unopened door.
I love Facetime. My whole family uses it and I log many hours each week on it with family. My goal is to increase my use of it or another video call app with friends.
I have canceled several medical appointments that were not urgent. I am waiting until the virus is under more control before getting cataract surgery in both eyes. I had one online (voice only) appointment with a neurologist I see for cognitive issues. I recently had a video appointment with another neurologist I see for movement symptoms and overall management of neurological issues.
The two online appointments (one each with two different neurologists I consult with every six months that I had worked well The video format was much more effective than the audio-only one I had early in the pandemic before video equipment had been installed in the offices of the Neurology Department.
When I had my appointment with the movement disorders expert, I found that we could accomplish much of what we did in an in-person visit. For instance, I adjusted my video camera a little and then walked up and down the hall for her to observe in the same way she had done for 10 years at her office. I help my hands up to the camera so that she could look at tremors and movement acuity. Surprisingly, I also found the interactions with a doctor I have worked with for years to be as relaxed and thorough as those I experience in person.
As someone who had early-onset dementia and neurodegeneration diagnosed before I was 60, I have watched myself decline in functioning level for a decade. Over that decade, the level of the decline from year to year was fairly constant although getting a little faster as I got older as would be expected. During the pandemic, my rate of cognitive decline as been dramatically greater.
The US government — either through commercial insurance companies or self insurance — shouold be providing a free term life insurance policy to those individuals (doctors, nurses, other healthcare professionals, facilities maintence workers, ambulance drivers, paraprofessionals, other) who die from COVID because of providing services to others with COVID. The cost of such policies is not high because they are for terms, not for a lifetime, and can be restricted to deaths caused by COVID directly or indirectly.
The people who unselfishly protect you andd your family from COVID today should be assured that the people of the United States will aid their families if they die while performing these services.
Anything less is just plain unfair.
I’d suggest a total of $3,000,000 OR MORE paid over 10 years from the time of the death. I’d also suggest that the payment for each person eligible (whether doctor or nurse or technician or facilities workers or ambulance drivers or teacher or other eligible individuals) should be the same.
Coverage should be retroactive for those who have already died before this policy is adopted.
We have a responsibility to insure that the families of our COVID-related workers are not destroyed as a result of taking care of the rest of us.
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.
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.
You cannot even try flying alone without the support and permission of your family and caregivers. Honor their wishes and judgments.
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.
Do not even go on the plane alone without a LOT of preparation. This is critical.
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.
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.
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.
In March 2018, @USNews and @AetnaNews published key results from their study of approximately 3,000 US counties. Each of these counties received a total score as an index of how healthy the community is as well as scores on 10 component parts of being a healthy community. Eighty indicators of community health were developed from standard, well-constructed, and valid datasets.
The Healthiest Communities rankings are based on well-collected longitudinal survey data from US government databases and those of well-established, not-for-profit organizations.
My professional conclusion is that the study is valid, reliable, and relevant. The index scores are based on a combination of expert judgment from independent professionals and data sources that are among the best available. Statistical analyses appear to be appropriate and expertly applied. Of course, as with all such studies, over time additional analyses can be made, interpretations can be added by experts of many disciplines not limited to health, and supplemental quantitative (numerical) and qualitative (judgment) data can be collected.
The report on America’s Healthiest Communities provides a summary of the top 500 communities. The remaining rankings are not revealed as the intent is to identify excellence and study it to establish models for other counties that are also working to improve the quality of life for their residents.
Data available on each community includes well-constructed indices of the following characteristics listed in the mind map below. Click on the map to increase its size.
I spent more than 25 years in my post-doctorate career studying the health of communities throughout the USA, including a) small “frontier counties” too small to be considered rural where there were 5 times as many cows as people and the trip to a doctor was more than an hour for more than 50 percent of the population; b) the fourth largest U.S. county in a location on the Mexican border; c) large-city neighboring “bedroom” counties; and d) healthcare systems in more than 100 other U.S counties. My work (in collaboration with my business partner Dr. Lisa Melchior and our staff at The Measurement Group) was primarily focused on developing high quality, effective, and accessible care and treatment for people with mental health problems, drug and alcohol abuse and addiction, HIV/AIDS, extreme poverty, unstable families, inadequate or housing, poor education, immigration status, criminal justice system involvement, dependence on public-supported health- and social-care systems, and legal unemployment with a subsequent dependence upon “illegal employment” such as selling drugs and sex work in order to support themselves and their minor children.
As we worked with health systems and clinics, what I concluded was that a very comprehensive service system with widespread support among residents, service providers, and elected officials was necessary to make a community healthy. It was clear that all of the major stakeholders in the system need to communicate clearly to the other stakeholders about what they could and could not do with available resources. Stakeholders needed to learn to how to leverage their resources with those of other stakeholders to provide better services for a lower cost. A permanent system of making decisions and sharing resources and improving services needed to be formed and nourished.
The basic components of our work included assembling data from sources such as surveys, focus groups, interviews, and public databases. We presented these data to groups of stakeholders and facilitated discussions on how various systems such as healthcare, public housing, law enforcement, and education-training could work together and share resources. Progress was monitored and evaluated and new cycles of data gathering, communicating, discussions, and program alterations were conducted.
The following diagram shows the steps our process went through in order to build a self-sustaining system of interdependent services and joint decision-making in order to make a community more healthy. Click on the mind map to increase its size.
It is often said that “it takes a village” to plan and implement long-lasting improvements in a community. It does, but it takes a few other things also as well. Click on the diagram to increase its size.