Let me start off saying that there is no official COVID Pandemic Syndrome in either the psychological or psychiatric literature that I and google are aware of.
There is a paper on “COVID Stress Syndrome” that I found while doing a google search after I was starting to upload this post to the Internet. The closely named paper that can be accessed HERE is a different conception than mine but of equal interest and equal importance as my comments.
The general approach I am taking is that the COVID pandemic has elicited a number of psychological reactions (different in inclusion, importance, and intensity for specific individuals) for most.
In other words, my approach is to point out that exposure to the pandemic over a period of a year or more has resulted in many people experiencing the psychological states, symptoms, and conditions shown in the mind map below. From my observation, many of us have and continue to experience these states probably because of extreme exposure over a long period of time to the conditions of the pandemic. As we know from decades of competent scientific research by tens of thousands of well-trained and smart mental health professionals on grief, anxiety, depression, anger and the other states in my diagram, these problems for most will not go away without some types of psychological intervention for most people. Depending upon the psychological problems an individual is experiencing, proven pharmaceutical-medical and/or behavioral-cognitive interventions are available they will need customized mental health services.
It would be very naive to assume that we need to vaccinate the entire world to finally control the spread of the novel coronavirus without also providing psychological-psychiatric services to those who do and will need them. If such services are not offered at minimal (or no) cost globally, hundreds of millions of people may suffer with depression and anxiety and alcoholism and drug abuse and domestic violence and deeply felt anger for the rest of their lives.
Let’s not forget about the COVID Pandemic Syndrome that is happening to most of us to varying degrees. If we don’t solve the psychological problems caused by the pandemic now, many will not fully recover. Mental health and medical interventions should be available to everyone living through the pandemic or its sequelae if we want the global population to recover and not expose the unborn babies and children of our future to these horrible psychological conditions.
Click on the diagram to expand it.
In a follow-up post I am going to provide links to a number of relevant and technically sound studies and speculations on the psychological consequences of the coronavirus.
Let’s be real. Most of the population of the world is suffering from the psychological consequences of dealing with the huge phenomenon of the covid pandemic. It is conceivable that the pandemic may last for several more years.
See your primary care doctor or a mental health specialist for help with the psychological consequences of living through such a stressing time. Psychotherapy, counseling, peer support groups, and/or psychiatric medications may be able to help you go back to being you.
2020 and 2021 contained huge shocks for everyone on the globe. We are all feeling confused, apprehensive, and out of control. Try to use the available resources in your community.
For emergencies virtually every community has 24/7 mental health and suicide prevention hotlines. Any hospital emergency room can also provide immediate help.
As we recover from the COVID pandemic, it is important to recognize that much of the world population has been under severe stress from the pressure of dealing with deaths of loved ones, uncertainty, financial pressures, anxiety, depression, and fear.
The symptoms of psychological crisis in the past 15 months are not going away without professional help.
The following show some of the ways that help needs to be offered. If even 10% of the global population has been affected by psychological stress, we have huge issues to address.
As the assault of the pandemic contiunues unabated, I find that I am getting increasingly numb to the causes and the effects. Some call this pandemic fatigue. Others call it trauma. Or overstimulation or shutdown on sensitivity to the continuing clatter. Yeah, I know a vaccine is supposed to save us, but I am so screwed by up by thoughts of what it means that 250,000 souls have been lost in 10 months, I casnnot even envision what it will feel like when 500,000 have died, a marker I think we will hit before the US population has all be vaccinated.
NUMB. No Understanding of the Many Battles.
Why do we fight about whether to wear a mask? The scientific research unequivocally shows masks save lives (including that of the wearer). Will we fight in a few months whether to get vaccinated? Probably so many will refuse that the overall protection for all of our citizens will be limited.
Why do we fight about dealing with the economy? We have far too many people crushed by unemployment. We can create millions of useful jobs that would improve the infrastructure of the country.
Why do we ignore the mental health and psychological processes injured by the ongoing pandemic? I feel crummy from the pandemic, your family and friends do, and you do. We should be able to agree it is a high priority to repair the damage the pandemic is doing to all of us. And, make even more jobs to achieve this.
Why are we so divided as a society? We have brutual political divisions affecting the healthcare and financial systems. We have racism, the denial of equal opportunity, gender and sexual orientation bias, and many other problems that are growing almost as fast as the virus spread.
I am trying hard to get over my own feelings of being NUMB. Maybe you should also try to stop being NUMB.
Let’s face reality. Very few people will come out of the pandemic enjoying good mental health. And over many years many will recover only partially.
It’s been a difficult time for most of us.
The diagram shows some of the things we have all been exposed to since late 2019. One key central issue is that most of us are not experienced with dealing with these issues. Stay inside your house for two years? Be unable to attend the funeral of a family member? Go to a friend’s house for dinner? Thanksgiving?
As we re-establish healthy lifestyles after the pandemic, it is quite important that shift many of our treatment and public health resources from COVID hospitalization into mental health services.
Get vaccinated. Your risk of getting Covid-19 is going way up if you are unvaccinated. If you do not have access to vaccine, wear a mask, stay six feet away from others, stay out of crowds, and wash your hands.
Variant Delta (D or the Indian variant also well-established in the UK) is the most severe of all variants to date, and is becoming the dominant version of Covid-19 in many countries. Many public health professionals predict that within a few months Variant Delta will the dominant strain globally and in the USA, much as it is currently dominant in India and the UK..
If you want to see the most current information about Covid-19, Variant Delta, search with Google or an alternative search engine. As I write this on June 19, 2021, there is a huge amount of news stories available. CNN has had good coverage on Variant Delta.
Current information is that Variant Delta is the most problematic and deadly Covid-19 variant yet.
The United States has not been able to control the covid pandemic. Amazingly to many epidemiologists and physicians, when you tell people to wear a mask and socially distance themselves from one another they do not do so.
This is not a surprise to mental health professionals.
With all of the chaos and psychological trauma and fear from coronavirus and the loss of one’s income and job, it is fairly obvious that people facing so many catastrophic stresses are going to find it difficult to change their behaviors with out support, training, and motivation to do so. Telling people to wear masks and stay home (even when the speaker is America’s favorite grandfatherly, world-famous physician Dr. Fauci) becomes an impossible task when you are worrying about where to get food tomorrow or pay rent or homeschool your child or the health of your aging parents.
Part of a successful response to a pandemic is not only developing a vaccine but also helping people deal with stress, get needed resources to repair their lives, and feel better about themselves and their futures. And then many of them can move their focus to wear a mask and social distance and accept the vaccine when it is available to them.
You know that. The immunologists and epidemiologists and administrators are not people-people but rather laboratory people. We need to get mental health and nursing and social work professionals on the side of those needing interventions to help them deal successfully with the covid pandemic.
The COVID-19 pandemic and all of the problems it has exposed or created in 2020 is far more than the transmission of the coronavirus.
It is my belief that COVID-19 is but one part of the pandemic. In the mind map diagram below I listed 14 plagues of the pandemic.[I rarely write about my personal religious beliefs but in this case, explaining mine is necessary to explain how I feel about the pandemic. I am sorry if you are offended.]
No matter how much individuals and communities pray to a Divine Being, it is my belief that Divine Intervention is not going to solve these problems whether you believe in Agnosticism, Animism, Atheism, Buddhism, Chinese Traditional Religion, Christianity, Hinduism, Islam, Judaism, Shinto, Sikhism, as well as any other major religions (or their non-religious but humanistic alternatives) that I have inadvertently omitted from the list.
We created all of the plagues that relate to COVID-19 and I believe we need to get ourselves out of them. It is not enough to rush to do medical research to eliminate the pandemic. We need to solve the problems of food insecurity, violence, poverty, intolerance, inadequate mental health, non-belief in science, and many others on my list of 14 plagues of which COVID-19 is but one.
We created this current mess. We need to solve it. Then we will have a kind and productive world that meets the needs of all. It is my belief that the Divine Beings and humanist non-religious congregations all require this commitment on our part. So if you are not working on eliminating one or more of these plagues, get off your butt. We would all benefit from your commitment and hard work. And I believe the Divine Being(s) you worship will all smile at the kindness and hard work.
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.
Mind maps and related methods can help you use visual thinking to fight against cognitive decline and dementia. These methods can also help you maintain physical and mental health by maintaining control, making good decisions, remembering key information, and planning. Or, maintaining self-sufficiency, control, and independence so as to retain an acceptable quality of life.
As part of its Healthiest Communities initiative, the Aetna Foundation recently hosted a panel discussion on improving community health in order to serve individuals and residents with programs that could result in better health. The panel was broadcast on Facebook Live. A video copy of the event can be accessed HERE.
The panelists include:
Dr. Garth Graham, President, Aetna Foundation
Lauren Singer, Environmental Advocate and Zero Waste Blogger/Author of TrashIs4Tossers
Dr. Pedro Noguera, Distinguished Professor of Education, UCLA
Jane Sarasohn-Kahn, Health Economist and Founder of the strategic health consultancy THINK-Health
Each of the participants brings unique expertise in trying to understand and enhance service systems as it relates to their respective fields, including public health, education, and community resources and environment. The panelists’ diverse professional training and experiences also brought different viewpoints and ways of interpreting what they observe and understand about community health.
I found the panel to be a very valuable one – full of ideas, suggestions, experiences and planning topics for those who want to intervene to make their communities more responsive to local needs and better able to promote health among their residents.
In order to put the process of community change into context, I watched the video of the panel and prepared two mind maps to show major themes that were discussed. In case you have not read a mind map before it is a fairly easy thing to do. Start at the big graphic in the center and then follow each branch to its end to see a major idea unfold. Mind maps are often used to present complicated relationships ideas in a visual form that is relatively easy to understand and which promotes better information retention and analysis.
The first mind map shows a summary of some general steps and issues important in developing a plan for a community to change some of its services and procedures to support healthy behaviors and effective treatment and intervention.
Please click the mind map to increase its size.
This second mind map shows detailed steps that can be taken in order to implement system change. While the process seems complicated it really is a series of “baby steps” designed to allow community members and organizations feel RESPONSIBLE and EMPOWERED.
Please click the image to increase its size.
Systems change in communities is very hard because many traditional departments (of health, social care, law enforcement, mental health, housing, and supplying food) need to be involved. Many community members wish to help but not if a treatment facility or homeless shelter or parole center is located near their homes. Many professionals and workers at County service facilities want to help and increase services but they are already over-worked and largely underpaid. Creative solutions are needed.
I collaborated with the Aetna Foundation to share their work and research on community health tied to my own expertise in working with county-wide service systems dealing with drug abuse, mental illness, and issues of service access for disenfranchised individuals. These include: poor/homeless individuals, drug abusers (often addicted to heroin, amphetamines, cocaine, and other drugs), those involved in the criminal justice system, street sex workers, extremely physically ill individuals, those diagnosed with a number of behavioral and mental problems, as well as those incapable of accessing services themselves. Over several decades Dr. Lisa Melchior of The Measurement Group and I developed services for the poorest and most fragile members of our society. Dr. Melchior continues our work.
Here are a few key lessons from the Facebook Live video and the broader Healthiest Communities research.
Building a healthier community is a very complicated process that involves hundreds (if not, thousands) of agency and individual stakeholders representing a large number of constituencies. Short video conferences such as the one summarized here can prove to be extremely valuable resources for many groups focusing on systems changes. A website featuring video presentations, townhall meetings, and discussions will prove invaluable for many U.S communities throughout the country look better and will help them become better and more efficient by learning “the secrets” of building successful change processes from others who have attempted such changes earlier.
Most communities that wish to develop and support change processes usually start with a “needs assessment” of where the community has already built important processes of developing and maintaining services and where the community would benefit from new efforts. A comprehensive database containing concise and valid rankings and research conducted by the Aetna Foundation and US News provides each county a “free needs assessment” or comparison of the community to its peer communities. Rather than requiring an investment of additional resources into expensive analyses of unmet needs, the presence of a mature and valid dataset will permit communities to very quickly review needs established in the existing work and then focus their own efforts and resources on developing plans for addressing the largest needs of the community.
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.
People who learn to take responsibility for their own actions could save me a lot of money.
have less kids born into families that cannot support them saving me money on social programs
are less likely to contract STDs especially HIV thus saving me money on STD prevention and treatment programs
graduate from high school (and college and grad school) thus qualifying them to be in higher tax brackets and save me from higher tax rates and subsidizing their living costs
live longer because they forgo tobacco and drinking alcohol to excess thus saving the entire health care system from huge wasted services
pick up their garbage and put it in trash receptacles thus saving me having to pay someone to pick up after them
recycle thus cutting the bill for environmental cleanup
The USA should incentivize self responsibility by granting payments to
every student who ever graduates from high school
every student who ever graduates from college
every student who ever earns a graduate degree
every 18 year old who has never had an STD
every 18 year old woman who has never been pregnant
every 18 year old man who has never fathered a child
every 21 year old who has never been convicted of a DUI offense
every 21 year old who has never used tobacco
every 21 year old who has a “normal” weight and is neither obese nor dangerously underweight
every 40 year old who has a “normal” weight and is neither obese nor dangerously underweight
every 50 year old who has never been convicted of a DUI offense
every 60 year old who has a “normal” weight and is neither obese nor dangerously underweight
Incentives would be in the form of one-time tax credits for the individual or the individual’s family. This means that incentives are only paid to workers and their families.
Oh, the government would supply free voluntary services to all residents on birth control methods including condoms freely available to all children old enough to conceive, unlimited voluntary counseling on avoiding self destructive behaviors, unlimited voluntary counseling on leading a healthy life, and unlimited voluntary counseling for reasons of family instability, mental health, child rearing, and birth control. None of these free services would include any components related to any religion. And legitimate and effective education at all levels from preschool through college would be free to any American resident of any age and with support services to ensure anyone can graduate.
If the USA were to provide fairly significant incentives for learning and exercising self responsible behaviors we could produce a citizenry that creates less problems and is less dependent upon social network and support programs for themselves and their children. This will leave a lot of money to spend on those who truly cannot deal with their own medical and psychological problems no matter what they personally do and probably leave some over for lower tax rates.
Wow. Incentives for studying, working hard, becoming a productive member of society, and paying for needed and fully effective programs for all of those who have mental or physical or developmental disease and cannot legitimately assume full responsibility for all aspects of their lives.
I’d love to see a similar set of ways to incentivize healthcare and education workers. Small increases in productivity and job satisfaction among these critical citizens saves a lot of money and produces a much more healthy society.
Oh, I know, I am a dreamer. After all, my proposal could never make it through Congress. Even though it will save lots of money, promote better lives through self responsibility, and leave sufficient resources for those who truly need medical and mental health services because of factors beyond their control, this is truly an anti-American proposal that expects self responsibility and does not let big religion bully small religions, agnostics, or atheists around.
Every once in a while we need a little revolution.
[Musings of a very liberal, very capitalist, individual who believes in self responsibility and taking care of anyone who cannot take care of themselves with first-rate, state-of-the-art programs.]
Trump/RyanCare another draft not submitted to Congress?
Within the extant and mythical healthcare plans, additional dementia care services need to be included. Most are cost-neutral or may actually save money while providing better patient outcomes.
Case Management makes existing healthcare services (doctor visits, medications, emergency care) work better. At a very small cost that should actually SAVE money, case management can provide better total patient care, cut unnecessary emergency room visits, and achieve better medication outcomes. What isn’t there to like?
Dementia Caregivers are most often UNPAID, female family members forced to juggle their own jobs/finances, families, and general lives to care for a loved one. Support is required for Dementia Caregivers in the forms of training, support, advice, and FINANCIAL COMPENSATION for their services. They do the work, they should get paid for their time. An upgraded system of paid family caregivers should make DementiaCare more effective and reduce other costs in the healthcare system to such a degree that it will be cost-neutral. An unnecessary hospital stay or emergency room visit can cost as much as $10,000 — $20,000. A family caregiver could be paid for 500 hours at $20 per hour for $10,000. Train family caregivers, pay them, and you have a cost neutral system. What isn’t there to like?
Mental Health issues often lead to huge patient distress, anxiety, and medical management problems. They can frustrate caregivers and lead to nonadherence to medication recommendations. Therapy and counseling can help patients and caregivers as well as cutting overall medical costs. What isn’t there to like?
Group Adult Daycare can provide needed respite for family caregivers as well as important social and recreational experiences for patients, thus enhancing their lives and to some degree ability to function independently. What isn’t there to like?
The following mind model provides some details. Click the image to expand it.
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.
For the last 15 years of my professional career, I coordinated consensus processes to build new local health and social services policies.
It was the best work and most fun I experienced during my career.
I was lucky to work with more than two thousand participants (in aggregate) helping to develop services for drug abuse, mental illness, social isolation, education, child care, medical services, domestic violence, HIV/AIDS, and more.
Here is a diagram of what I believe to be key parts of developing consensus public policy.
Click on the mind map to expand it.
Had various government agencies used a model like mine, they would have been able to get a higher percentage of the population agree to be vaccinated.
This is not psychological advice. If you are inclined to make a transition in how you think and behave, consult your doctor or a licensed mental health professional. My suggestions are ones that I believe have worked for me. They may or may not apply to you and you will not know if change is a good idea or not for you unless you consult with a qualified medical or mental health professional.
To live better and to live well, you probably need to make the transition from thinking how things were or could have been THEN and deal with the fact that this is NOW and no amount of wishful thinking is going to make things the way were before dementia hit you or someone for whom you provide care. It will never be easy for anyone to deal with dementia but you can probably make a transition if you are willing to let go of the past.
A few issues in making the change are in the mind map below. Click on it to make the map larger and to zoom in.
Note. PWD (or pwd) means person with dementia.
This presentation focuses in on parts of the map above. It will run automatically. If you would like to go through at your own pace, hit the pause button and then the arrow keys to manually move among the slides.
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.
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.
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 mind model (aka mind map) below discusses my vision in developing the dementia focus on this website. I started to build the web site about two years after being diagnosed with a neurodegenerative condition (2012). Thus the entire blog is the work of a developer experiencing dementia while designing and preparing the content for the site. The site discusses my progression through cognitive impairment and decline into dementia. More importantly it discusses how I tried to help myself coordinate and use to full advantage the support and professional expertise made available to me by family, friends, the community, my doctors, and the general world-wide of patients and professionals the major issues.
Nothing in this blog post (or any other on blog post or page on the site) is intended to be, or promoted as medical, psychological, or any other form of treatment. The ideas in this blog are about using some commonsense note-taking and visual thinking methods to possible help you live better with dementia. I tried it on myself (only) and I am encouraged although I freely admit that full scientific study is needed.
These methods and comments will not substitute for medical and other professional treatments. They do not cure dementia. They do not slow down the progress of dementia. For me, at least, the methods have sustained and increased my quality of life and I do spend more time with my family and am more independent and in my opinion think better. But my dementia is not being treated and getting better; what I propose are methods that may make it easier to independently manage selected parts of your life, be in a better mood because you are trying to help yourself, be less of a burden to your caregivers, and report better to doctor what your experiences have been since the last appointment.
Many people are miserable almost all days when they have dementia. If simple, inexpensive cognitive tools can improve some or many of those days, the development of such techniques is a huge step forward.
I hope that others will examine the information here and use it to improve the decisions they, their caregivers, and their doctors and nurses must make about their formal medical treatment.
Here is what appears in the blog posts and elsewhere on Hubaisms.com.
Click on the image to expand it.
Click here to see Part 2 of My Vision in a separate window.
The first dirty little secret of mind mapping is that consultants on mind mapping who know little (or in most cases nothing) about neuroscience and cognitive psychology and dementia will make mind maps with dementia content that is “questionable” or just completely wrong and do not hesitate to share it on the Internet or through other forms of marketing. Many commercial claims such as “discovery” or “research” will be made. But it is very likely that the maps being sold are not valid or relevant and could “hurt” persons with dementia.
The second dirty little secret is that many of the content dementia mind maps are made by computer program developers who just want some colorful maps to sell their programs. These companies do not use current evidence-based research or expert consultants or persons with dementia as a source of information.
The third dirty little secret of mind mapping is it takes years to learn dementia care and a 1-3 days o learn mind mapping to an acceptable level to develop nicely-formated mind maps.
Who do you think is more likely to produce mind maps relevant to the health care system that will not hurt patients by providing poor information? Category 1 or Category 2?
Someone who studied healthcare, medicine, nursing, social work, psychology or a related field for 4-8 years and learned mind mapping in a few days and then spent significant time thinking about how to correctly integrate mind mapping tools into healthcare or a person with dementia who has learned to use mind mapping to express themselves and is a good observer of their own feelings and behaviors or a caregiver who has significant experience with dementia by caring for a family member or other persons with dementia AS COMPARED TO …
Someone who developed training methods, a lucrative business consulting practice, or a computer program for mind mapping but knows little about healthcare and psychological content?
The answer is a no-brainer. If you cannot see the difference between valid information from Category 1 mind mappers and that from Category 2 mind mappers you should not be producing dementia or other health-medical mind maps.
A mind map with the issues follows. Click to expand it.
The following automatic presentation shows the major issues in assessing the value of mind maps offered for sale (or free). It contains identical information to the mind map above but is formatted so as to show one part of the map at a time. If you would like to run the presentation manually, hit the pause button within the presentation and use the arrow keys on your keyboard to work through the presentation at your own pace.
Mind maps are powerful thinking and communication tools. But, especially in the fields of healthcare, social care, medicine, and mental health, mind maps need to reflect established evidence-based research OR clinical observations OR careful observations of persons with a condition and their caregivers. For the professionals, individuals should be licensed by their local jurisdiction as required by law. Patients and caregivers should be receiving treatment and information from physicians or other licensed professionals as part of the person with treatment.
Medical and health mind maps must developed to a much higher standard than business mind maps. In the business arena, the content in mind maps typically is developed from personal theories of individuals and is rarely substantiated by peer-reviewed research, careful observation, and is typically motivated by obtaining and retain consulting clients.
While I personally believe business mind maps should also be developed to a higher standard for their content and theoretical as well as business motives, I KNOW that medical and healthcare mind maps for people with dementia must carefully reflect the experience of the person with dementia, family members, caregivers, clinical observations, and peer-reviewed research.
Medical patients can use a lot of help in managing their treatment, lifestyle needs, mental health services, and social care.
Doctor visit? Got it. Food? Yup. Transportation? Here’s the taxi. Funds to help from the State? Let’s file the forms together. Frustrated? OK, they are jerks at the government office but I know a person who can help us. Which doctor? Everybody loves Dr B and thinks she is terrific. Forget to take a pill? Let’s look up the instructions for that medicine.
Case managers — be they nurses, social workers, peer counselors, other healthcare providers, caregivers, the local religious social services agency — make the health system work. Equitably. Rapidly. Efficiently. Effectively. Masters of greasing the sticky door.
For the masters of multi-tasking, being interrupted, needing to work rapidly, required to document everything, and needing to stay calm and collected what better professional tools than a costume with a cape (and flight capacity) and a mind map to guide the way?
This is an extract from a news item on the Kurzweil web site two days ago (July 20, 2015).
[Click on the text to expand.]
My contest entry is as follows.
Dear Humble and Enlightened Being Who are Probably Figments of the Imagination of Dr. Hawking:
Should you actually exist, I hope that you will realize that the search is being made by an arrogant Billionaire and several arrogant Academics who put their own egos and needs for fame ahead of the billions of people on our planet who do not have enough food, water, or healthcare.
Should you receive their cell call, I suspect your response might be, “WTF did you waste $100M on a phone call to us when you could have used it to feed starving children on your own planet?”
Alternately, if you would like to save money on the return call, sending back “WTF” as your message would probably suffice and convey the full meaning.
PS. This new initiative may be because our planet does provide effective education, ethical training, and mental health services to its inhabitants.
If I win I will donate the prize to an effective non-profit organization that will lobby billionaires to spend their money wisely to benefit the poor of our planet. If the rich donate more money than is needed to end planetary deprivation, then perhaps we could consider using the remaining funds for long-distance cell-telescope calls to beings who probably are not at home.
Of course people with dementia feel stress, maybe especially because they have dementia and how it limits the way they can deal with the others and others will try to deal with them.
In my case, I have recently started to have problems understanding what people are saying to me. Spoken words are easily lost in echoes, the background noise of social situations, different styles of speaking such as diminishing volume when people are saying something private, hypersensitivity to perceived anger in areas of behavior about which I am self conscious (don’t tell me I missed an area shaving after I put the shaver down because of the environment), and don’t assume because I do not immediately respond to a question that I cannot hear you or do not understand you. I may not multitask as well as I did before. Sometimes I just have to respond to the most important things first and shaving is not the most important.
People around those with dementia may quite often misinterpret the behavior or words of the person with dementia. For many with dementia, facial expressions and other nonverbal behaviors do not match those of the majority of the population and while someone might look angry with you because their facial expression seems quite “unusual” they might actually be laughing heartily at a joke you just made. Lack of smiling does not necessarily mean lack of interest or lack of happiness. In fact, it is even quite likely that the person is most happy at those times they have a rather blank looking face because they are thinking so much about something good and enjoyable that the energy is not going into moving facial muscles.
All of this “disconnect” behavior can lead to stress for the person with dementia or cognitive impairment, the person dealing with other issues (everybody has issues), and the pair trying to have an enjoyable and productive time together.
How to cope? I have a few ideas that often work for me. Will they work for you? I DO NOT CLAIM TO KNOW NOR AM I CITING ANYONE WHO HAS ESTABLISHED EMPIRICALLY THE VALIDITY OF WHAT IS SAID BELOW. THE INFORMATION IN THE MIND MAP IS BASED ON OBSERVATIONS I HAVE MADE OF MYSELF.
THE INFORMATION BELOW IS NOT PSYCHOLOGICAL OR MEDICAL ADVICE. SEE AN APPROPRIATE MEDICAL SPECIALIST OR LICENSED MENTAL HEALTH PROVIDER IF YOU HAVE THESE ISSUES. I HAVE NEVER HAD A CLINICAL PSYCHOLOGICAL PRACTICE WITH PATIENTS, I AM NOT A PHYSICIAN, AND I DO NOT CLAIM ANY EXPERIENCE IN PROVIDING PSYCHOLOGICAL SERVICES OF A CLINICAL NATURE.
So here is a perspective based on me and containing actions I take. I make NO claim that these fit you or that any of the reactions I have are the same as yours. TALK TO A DOCTOR OR OTHER LICENSED PROFESSIONAL. Think of the following as set of hypotheses only one person (me) believes and I am not claiming that I believe that these ideas fit you.
Having said that, here are issues I think about for me.
Click the image to expand it.
Want to learn more about my experiences with cognitive impairment and dementia and attempts to fight back using visual thinking methods and mind mapping to understand and communicate the problems and solutions?
<<<<<=== Over there on the left. Click on one of the book icons to obtain my new book Mind Mapping, Cognitive Impairment, and Dementia. Versions are available for Apple devices on the iBooks store and all other common devices on the Amazon Kindle store. There are 100s of essays like that in this blog post. And because I know the information is unique and valuable, I am charging about the same as others who write books on dementia or mind mapping. If you cannot afford to purchase the book, contact me and we will figure out a way to get it to you.
Yeah, I know, shameless self promotion. How else do you expect me to get the message out about the “real issues” in dementia care and some very low cost methods of assistance that may help some (or many) and potentially increase the period of independence and get away from stacking people up in hospital beds where their lives become very limited. As someone who lives with the problems I describe, I only have a limited period of time left for my brain to function well enough to get the message out, and I am going to use it as effectively as possible to make my messages stick in the minds of people with dementia, caregivers, family, healthcare providers, decision makers, those aging, those with other types of cognitive impairment, and other interested parties. Expect more shameless self promotion. Doesn’t bother me at all. In fact, I am kind of proud of the fact that I want to shake up and expand your conception of what the problems are and what are some possible solutions most have never even considered.
The BIG D — currently the most dreaded way to die in the world.
I occasionally get tweets when I write columns on living well with dementia stating that the writer will — if he or she gets dementia in later years — consider committing suicide. At times people imply that I should also.
I regard most of these arguments as emotional masturbation although I also know that some people will go through with such a plan. I feel very sorry for them and wish that we had a better mental health system to deal with their pain and confusion.
You saw your Mom or your Gramps suffer (or at least you thought they were suffering while they were causing work and other problems for you). It scares you, it enrages you that lifetime savings are wiped out and do not pass between generations, it messes up your own relationships with your own nuclear family. You feel powerless and guilty and angry and helpless. And very, very tired.
The BIG D your Dad and Grandmother had are becoming the little d. Treatments are being developed for all types of dementia causing conditions, and you can expect them to be available in the not too distant future of 10-20 years. Behavioral interventions can greatly improve quality of life. Treatment will get less expensive over time (and even less so if we nationalize Big Pharma for the good of the world). Improved housing, professional caregiving, education of healthcare providers to make early identifications of impending dementia, and cost saving measures make it easier and cheaper to have a continuing good quality of life while living with dementia. Yes, I am too advanced to probably benefit much from forthcoming huge changes in dementia care and treatment, but my children and yours will which is something to look forward to.
OK, you are sitting there saying this guy is full of shit. Not really. In 1992 I started two decades of evaluating and helping improve some of the most creative and innovative programs for HIV/AIDS treatment and prevention funded by the US government. From 1992-6, I watched literally dozens of my friends and coworkers die of AIDS 20 to 40 years before their life expectancy in an AIDS-free world. In the mid-90s I had dozens of additional friends in their 20s through 40s with HIV/AIDS who had a life expectancy of a few years and a miserable death ahead of them. Then came the medical miracle of antiretroviral drugs. Almost all of the folks I was close to who moved onto the new treatment regimen are alive now 20 years later and living pretty “normal” lives. Many moved from being uneducated street youth to PhDs and program administrators and federal employees and teachers and parents. Yes, parents. And quite good ones. Also, good taxpayers.
The BIG H (HIV/AIDS) was tamed for those who could be identified early and were in countries where antiretroviral drugs could be made available for a reasonable cost within differing levels of national average income. Much more remains to be done to fully tame HIV/AIDS, especially in Africa, a continent ignored by the rich nations. But the tools are there and the money should be. Should the big governments of the world not be willing to make this happen, perhaps the big religions of the world who have amassed reserved of valuable property and cash could use their funds to solve these medical problems.
I have no doubt the BIG D can be tamed like the BIG H and that the same problems with sharing the costs for treatment in the developed and undeveloped world will occur. And I greatly doubt various political factions will want to spend the dollars needed for research and developing treatments and making them universally available along with lifestyle training programs to help prevent certain kinds of dementia.
Stop thinking about suicide if you get dementia and start thinking about electing politicians who know that the horrible diseases of the past and their somewhat milder versions of the present can be tamed far more rapidly if resources are turned into medical research and treatment rather than bombs and trying to control countries with different religions and peoples of different colors than your own. Elect someone who has the guts to take on the aggressive capitalists of Big Pharma and conservative governments.
And do not send me tweets suggesting that you are morally superior to me because you will commit suicide to save society money if you get dementia. I think that is VERY wrong.
The BIG D is going to be a disease that will be solved eventually. And you will have a milder and less lifestyle disrupting version than your grandparents and parents. Speed up the process of making these advancements by fighting to devote resources to the development of the solutions. Emotional masturbation that maybe you will commit suicide in the future to “save society the cost after it is helpless for me” is not doing a damn thing to solve the mysteries of the neurological diseases that cause dementia. Devote the later stages of your life to looking for solutions, not giving in and accepting misery for yourself and your descendents or thinking Donald Trump is going to solve your problems.
Dementia care and treatment is changing for the better in a manner that is far more rapid than the garbage you read about in the news channels on the Internet. On the other hand, the politicians who allocate public monies are being more stoopid about health issues than ever, a fact rarely stated in its full ugliness in the press.
Here is how I see the situation. Click on the mind map to expand it for easier viewing.
And don’t give up. It is not going to be as bad as it was for your grandparents and parents. And you have lots of technologies and treatment innovations to make your quality of life better.
And use the time you gain from the advances in dementia treatment and care to help speed the progression of the work to solve this and all other diseases.
A few years ago I set out — as I have discussed in this blog many times — to “prove” that a person with dementia can use mind mapping in numerous ways to improve the quality of life.
Yes, a big “clinical trial” is the right way to make such a test. But I had no resources to run a clinical trial and even more importantly, no time and energy. And I mean time defined as “productive, predicted remaining life span.”
But I did have a willing participant with dementia (me) and a huge audience on social media. It is now about 4 1/2 years since I first posted a mind map on my blog site. The blog site www.Hubaisms.com now contains more than 1,000 mind maps and more than 700 posts.
Through my blog posts and their observations, usefulness to others, and my medical path, I’ve demonstrated that the technique can by used at least for one person on this planet daily and with results shown on the Internet for all to see.
No one should assume that because I believe that the method has proven effective for me that it will be effective for them. You should consult your own health care providers if you wish to try this for yourself or a person under your care.
There are many, many, many examples of the use of the methods on the blog site. What’s you excuse for not spending an hour reviewing them? My methods are useful with my dementia, but most also apply to — with a few adaptations — many other physical and mental diseases.
Back in 2012, I published a mind map on this blog suggesting that giving people one chance to learn (as in, you only get one taxpayer-subsidized educational opportunity) or to receive free treatment for drug abuse (as in, if you can’t quit the first time you are morally undeserving because you do not have the moral strength) or to receive specialized behaviorally-related healthcare (as in, you let yourself get fat or nicotine-dependent or out-of-shape so you pay the consequences) is an obscene abuse of other individuals,
It’s just as true now as it was then. I know more about mind mapping now and am even more irritated by those who want to balance the budget by not helping others enough, or even at all. So I thought I would revise my mind map and make this a post a lot more angry that we do not give people second (or even eighteenth chances).
Show me a drug abuse treatment provider who says you can go through treatment one time and it will “stick” and I’ll show you a snake oil salesperson who is trying to sell services to 18 year old entertainment industry billionaires surrounded by a media feeding frenzy. Do you really want to deny additional free education to someone who realizes in their 30s or after going to prison or after achieving a stabilized life without drugs or while serving our country in the Armed Services that they need more education to get good jobs and be successful and much better citizens? Mental health services should not be denied or limited to tossing people pills because someone lost the genetic lottery and has a life-time disease or experienced trauma (like a rape victim or maybe somebody unlucky enough to have lived in an earthquake or hurricane zone or in a dangerous neighborhood or in an Armed Services encampment in Afghanistan, Iraq, or Vietmam).
Enough said. The picture will tell more than 100,000 words ever could. And if one fails after 18 chances?
Well, there’s always a 19th chance or a 36th chance waiting. [And a special ring in hell waiting for those who would only offer people one chance at happiness or productivity or health. Or the politicians who supported this position to get (re)elected.] Oh, and if you were one who denied others a second chance, you have a second chance to act in a more moral and supportive way and give others that second or 18th chance.
Click on the image to expand. Then think about whether we should invest in people and families or in creating the wealthiest uber-class in the history of the United States?
Living independently or semi-independently with cognitive impairment and early stage dementia is an admirable goal. Remember, however, that there are many cautions and possible problems that you, your caretaker, your family, and your doctors need to be aware of and monitor.
Plan to discuss these (and other) issues with your doctors and others on a regular basis. It is an important part of trying to stay as independent as possible.
It is not illegal in the United States to ask job candidates to take physical and psychological examinations before being hired for a job that has huge physical and psychological demands. For instance, such public employees as police officers, firefighters, military personnel, and others take appropriate physical and psychological tests both before and during employment. They also take tests to detect illegal drug use.
As Americans like to say, the POTUS job is the most powerful person in the world. There is no question that the job has the huge physical demands of prolonged periods of 12-16 hour days under high stress condition. Many problems can be made much worse by such a lifestyle. The president also makes make key decisions, often under high duress and without full data, than can affect the lives and welfare of thousands if not millions of individuals throughout the world. We all know about the use or not of the nuclear codes, but remember that the President may make decisions daily or weekly that affect the safety and well beings of US and other world citizens in profound ways such as food distribution, medical aid and research, international trade agreements, and regulations on the US stock market and financial institutions.
Most Americans agree that we want healthy law enforcement officers that can assist in situations requiring physical fitness without harm to themselves. We also agree that we do not wish to have psychologically distressed individuals without mental stability intervening into situations of aggression, ambiguity, potential harm to bystanders, or mistaking innocent individuals for those who have committed a crime. The same is true for all other first-responders, military personnel, nuclear plant operators, airline pilots, and many more.
Why are willing to let someone be hired for the job as President of the United States (through the process of majority vote) without complete physical, psychological, and neuropsychological examinations conducted by a team of physicians, psychologists, and other appropriate healthcare professionals. A team of 3-9 individuals could be appointed through some type of consensus process among professional associations and political parties. Even better, we could make use of some of the thousands of highly qualified and brilliant healthcare professionals who are officers of the US Military and already sworn to protect the Constitution and laws of the United States without regard to partisan issues.
If there was ever a time to implement this, it is before the November presidential election this year.
I do not want an individual as the “most powerful person in the world” who is physically and/or mentally unfit for the job unknowingly hired by the electorate. I am especially concerned that candidates above the age of 50 could have untreatable neurodegenerative diseases (such as I have) that affect decision making processes, especially under stress.
If POTUS is the most powerful job in the world, it should have the most stringent job requirements including physical, mental, and neuropsychological health making it possible to adequately perform the high demands of the job. Cutting through all of the politics, I believe that the physicians, psychologists, nurses, and other healthcare professionals of the US Military are capable of making competent, non-partisan judgments about fitness requirements for ensuring that the Constitution of the US is protected and followed.
Given the public statements being made by both presumptive presidential candidates this year, it is time to ensure that the contentious statements made by both are not the product of physical, mental, or neuropsychological illness, and rather are being made by motivated but angry, expressive but overly so, individuals using typical standards of normal and healthy logic and decision making. The electorate deserves to be informed about the results of such fitness exams before making the decision in November whether to hire one or none of these candidates.