The pattern of the overall service needs of individuals who become (or became) infected with COVID-19 is very complicated. This group probably requires continued medical monitoring for continuing or new symptoms of COVID, psychological counseling, they may need to be in a support group to help them deal with the trauma of treatment or having friends and family die, they may need help in dealing with basic needs (food, shelter-rent, childcare, and many other things). They might also require help getting a job or requesting unemployment or child care or healthcare payments from government and (former) employer services.
What would case management system look like when applied to helping those needing COVID-related help. Take a look at the figure above.
The next tweet deals with setting up an appropriate service system.
A comprehensive continuum of care is needed to provide services needed for many, if not all, infected by COVID-19 and their families. Not everyone will need all of the services shown in the mind map but many will require a large subset of these in addition to medical care. Case managers help link patients to both the medical and the social care they need to combat Post Traumatic Stress Disorder, a loss of income, stress on their families, child care for families with children, and many other services provided by most counties in the United State or through non-profit integrated care facilities, or charitable groups with many communications. The case manager will also follow up with all of the agencies helping the client (patient) to ensure they all have the same information and are communicating with one another in an integrated way.
Why didn’t we realize that superb medical care by motivated and brilliant health care professionals would not be enough to tame the COVID-10 pandemic? We have the largest, most expensive, state-of-the healthcare system in the world.
But our healthcare delivery system is not designed to seamlessly prevent or counsel or treat such effects from a pandemic as PTSD (post-traumatic stress disorder), anger, anxiety, fear, excessive drinking, drug abuse, domestic (or other) violence, case management, food security, help to obtain income replacement, and guidelines for planning the future.
While our healthcare system can provide state-of-the-art medical care with state-of-the-art equipment and state-of-the-art professional training and state-of-the-art pharmaceutical interventions, it cannot get people to wear face masks during a respiratory pandemic or to rechannel fear into positive actions or put societal concerns above personal concerns at time when collective consensus is needed to improve the health of individuals.
If you want people to wear masks, you need to help them get over the psychological toll of the pandemic so they do not respond in anger.
Many terrified people cannot deal effectively with getting a new job unless you help them deal with the trauma from the pandemic that is “freezing” their inactions.
Our healthcare system has traditionally not included integrated counseling and psychotherapy, support groups, case management, food assistance, payment of medical bills, transportation, child care while ill with COVID or at a doctor appointment or job, homeschooling, and many other needed services.
If we cannot provide such social services we cannot expect people to follow guidance from public health officials about how to control the pandemic. Everyone needs and should have help to recover from the psychological and financial trauma and uncertainty in our lives. Unfortunately, our healthcare system is not designed to provide social services and these huge needs are not being addressed by our government.
We need to bring social and psychological services into the medical continuum of care now being used. And there is no way we can avoid doing so if we want the pandemic to come under control and to regain our lives.
The following mind map shows my thoughts on what the continuum of services is missing. Click the image to expand it.
Last week (June 14, 2017) I received an email from a close friend with a link to an article generated by the North Carolina station of the National Public Radio a month ago. Along with noting that the research process was not what it once was — specifically that I had received a description of a study carried out in India from a psychologist in Israel with a summary of a radio broadcast generated about five miles from my home.
The changes in how we think, process and access information, and communicate change dramatically annually (as well as monthly, weekly, daily even). But is everyone changing how they fit to match our modern world and its information use possibilities?
People of many different income, education, social, and other strata within Indian society took EEGs to study their alpha brain patterns. There were many differences between the way that their brains seemed to work as measured by EEG indicators that could potentially be explained by differences in exposure to different levels and kinds of technologies.
A summary of the work appears here and was written by the University of California, Berkeley, philosopher Alva Noe. Noe discusses how brain wave patterns may have changed as individuals are exposed to the dramatic new information access and processing annually. The original scientific research by DhanyaParameshwaran and Tara C.Thiagarajan appears here. Noe notes that one of the “problems” in our current conceptions of neurocognitive science is that virtually all of the experimental results have been derived from “WEIRD” brains, that is individuals educated in current technologies within western, industrialized, rich democracies. The Indian results suggest that there are different patterns of “NORMAL” brain waves among individual from other backgrounds.
A phrase you have heard thousands of times (especially if you have lived in California as I did for 30 years). If you have dementia you may groan or the statement may make you angry or you might make a pointed comment back.
Chill, Dudes and Dudettes.
OK, I get it (well actually have gotten it for a number of years since diagnosis). There may not be a 100% good day for you anymore if you have dementia. But how about a perfect (or even good) 20 minutes having coffee with a friend or an hour solving a puzzle with a grandchild or 100 minutes watching Guardians of the Galaxy 2 complete with a refillable tub of popcorn. Yup, these periods of a good day may be followed by a period of frustration or not being able to remember something or difficulty doing a task of daily living.
Use the Force, Luke.
Good moments can be great moments if you let them be. They may last only for few minutes or an afternoon, but given that your brain is “sick” they are a huge gift and blessing. Focus on what is happening to you now, try to not let the bad upset you unduly, and try to enjoy every moment for every second possible.
You may master the Force. You may feel better. Is there a better use of your time?
Focus on what is, not what was.
Click the image of the mind model (mind map) to expand it.
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.
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 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.
This mind model (aka mind map) below shows a “Circle of Care” for persons successfully living well with dementia. The ability to access such a network when needed is a goal that the healthcare and social care systems should strive to attain.
While this may appear to be a daunting task, remember that most of these services exist in some form in most places but in most instances are not coordinated nor aware of the contributions of other sources. The key to making the “system work” is successful (care or case management) of the individual.
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.
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.
I would categorize the pioneering efforts of Tony Buzan and many others to introduce and popularize the method of mind mapping as Mind Mapping 1.0. While mind map program vendors, sellers of consulting and training services, and others sometimes get quite loud in arguing who was the “inventor” of the method, I see claims of who invented what to be primarily marketing ones similar to those used in advertising colas, laundry detergents, and personal hygiene products. The identification of the organization or individual most responsible for making the method practical and useful is much more important than the term “inventor.” It is very clear to me that Tony Buzan was the one who took many ideas about visual thinking, the primitive neuroscience of the day (1970s), creativity, brainstorming, and management and formed it into a coherent and useful model of “mind mapping.” Had he not, the majority of the other players in the field would not be following his suggestions and rules (or arguing vociferously against them) or frequently copying his computer program.
The parameterizations and resulting computer programs by ThinkBuzan, Topicscape, Mindjet, and others comprise Mind Mapping 2.0. Buzan’s ideas and those of many others were incorporated into efficient and accessible computer programs that opened the mind mapping methods to a far larger audience of students, managers, and others.The iMindMap program by Griffiths and his colleagues at Open Genius is by far the best of the lot. Over time, the best programs have evolved into more general visual thinking environments I term these VITHENs) which feature mind maps as the core element but allow the author to show supporting data on the map or as annotations. Annotations can be links, graphs, comments, citations, and other forms of information that support the map or add expert justifications. Technical improvements in these programs are still frequently introduced. I consider Mind Mapping 2.0 to have been more important than Mind Mapping 1.0, and the contributions of Griffiths to how visual thinking should look and be implemented to be seminal.
[As I saw it in 2012 and continue to view it in 2015] Mind Mapping 3.0 is the integration of computer-assisted mind mapping methods, artistic sensibility to enhance visualization, AND MOST IMPORTANTLY, substantive, creative, well-documented valid and reliable content of great importance.
Mind Mapping 3.0’s primary characteristic is that it emphasizes content within the mind map. Mind mapping has evolved from its start as a method which emphasized brainstorming, management observations, and business functions (calendars, timelines, responsibilities) into a much general form that permits the development of knowledge databases and models, communicates history and science, and can organize the rules of English for those learning the language.
Mind Mapping 4.0 goes far beyond Mind Mapping 3.0 as each map is created from the perspective of an expert both in the content area (such as dementia or memory or stress or the plays of Shakespeare or the development of the nuclear age) and the application of specific and unique styles of mind mapping to maximize the utility of the resulting mind maps.
The expert mind maps may then be turned into templates suitable for distribution to end users (such as healthcare providers, patients-clients, caregivers, managers, employees, educators, students, scholars, politicians, news reporters, engineers and hundreds of other end user groups. The key feature is that an expert is able to combine a high level of knowledge and expertise in the content area of the map with very advanced “formatting” methods (colors, fonts, organic or boxed styles, and others of format styles in the Buzan guidelines) using the very best combination of these for the subject matter, template users, objectives of the map, and for enhancing wanted outcomes and minimizing unwanted ones. Additionally, the expert needs to decide whether to use Buzan’s fairly standard and rigid rule of one word per branch in the mind map, Huba’s flexible, more valid judgment-based rule of one concept per branch, some combination of the two, or another innovative approach.Mind Mapping 4.0 is a highly accurate description of content (substantive) knowledge by an expert who also has the highest level of mind mapping expertise or collaborates in a team with an expert in mind mapping.
Does an “expert” in content matters need to have graduated from a specific degree program, taken a specific set of courses, had a certain number of hours of classroom or practicum hours, or obtained a specific professional license? I believe the answer to be ABSOLUTELY NOT. While formally educated professionals are typically content experts in some areas of specialization, this is not universally the case. Many people running around with doctoral-level training are not content experts in any area and many draw conclusions outside their areas of expertise. And certain topics (such as patient perceptions on disease or feelings or creative solutions to conflicts) are almost universally ignored by “advanced degree” content experts.In addition to the formally educated experts, there are many people who have become experts in various content areas through life experiences, self-teaching, on the job observations and inspirations, brainstorming, synthesizing the views of others, the experiences of disease and achievement, and personal research.
These are true experts. As was often said in earlier prehistoric times (the 1950s and 60s), they are graduates of the “School of Hard Knocks.” Among other famous graduates from this form of education is Bill Gates.In Mind Mapping 4.0, experts in some content area (a medical disease, mindfulness, best practices for management, the exploits of Henry the VIIIth, the history of caffeine addiction, the poor decisions of George W Bush, trends in high fashion, urban dictionaries, the characters of Star Wars, the jokes of Groucho Marx) use their knowledge, supporting data, research, synthesis, and creative insights to develop mind maps. With expertise in the possibilities of mind maps and their usage, in Mind Mapping 4.0, definitive content can be presented in mind maps that “bend” formal rules of mapping and present the best ways of formatting maps for the audience, type of information, intended actions, memory retention, creative insight, novelty, humor, and acceptance of new ideas, as well as unambiguous and easily understood communication.
In Mind Mapping 4.0, the presentation of new thinking and excellent information is enhanced and supported by the use of the “best” techniques of mind mapping tailored to the purposes for which the map was developed.Mind Mapping 4.0 should produce easily understood maps that can be translated into templates that can be widely used by others (as some examples consider such content as medical symptoms and disease screening, pharmaceuticals, recommended treatments, cautions, coming trends, and research findings in the areas of healthcare where I work).
Some characteristics and concepts of Mind Mapping 4.0.Click the mind map to expand it.
The following presentation presents one section of the mind map at a time. If you would like to go through the presentation at your own speed, click the stop button in the presentation and use the arrow keys to navigate
In the previous blog post, I showed myself creating a mind map over a 39 minute period. It was a pretty smooth experience. I have dementia and my blog Hubaisms.com uses mind maps to explain my experiences. I also use mind maps to guide my day-to-day life.
As context, I have a PhD in Psychology from a highly prestigious US university, 35 years experience as a researcher and CEO of a “high-tech” management and program evaluation consulting firm I founded in 1988, and a diagnosis of neurodegenerative disease (NOT Alzheimer’s disease) made when I was 59 years old. Using extant research, it is reasonable to say that I had the condition at least as early as the age of 55 and probably earlier, especially since I began treatment with a psychiatrist (a common occurrence for those with neurodegenerative disease since the symptoms first appear psychological before later appearing neurological) at that time. I am now 64 years old. I have been considered to have been partially disabled (by my insurance company) since late mid 2009 and fully disabled by the same insurer and the US Social Security Agency when I had to retire at the age of 60 in 2011. Both the insurer and the SSA consulted with independent neurologists to confirm the diagnoses and advice of my own physicians.
Since 2010 I have used Buzan style organic mind mapping to help me communicate and plan, organize, make decisions, remember, and maintain some skills I once had. The method works FOR ME and I am quite grateful to Tony Buzan for his pioneering work that allowed me to embark on my research and trial-and-error search for some tools that would help me.
Here is a second mind mapping session I recorded about 16 hours after the first one (around 9 AM today) BEFORE taking any medication for the day. The mind map is one which is probably easier to develop under normal circumstances than the first.
As you will see in the video I had a lot of stop and start periods when I lost my place as I got caught up in thought about what I wanted to create, but I was able to continue productively as I used my prior work to regroup.
Nonetheless, I think I did a pretty job that just had a lower productivity rate (since it was an easier map to create) to complete.
The map yesterday was created in the late afternoon after I had taken several doses (morning and afternoon) of medications for attention, mood stabilization, tremor control, and cognitive functioning. The medications do not produce large effects in my cognition, but in this case they did focus my attention to some degree but have not been shown to be effective for the type of neurodegenerative disease I have and are being used off-label by my doctors (as is typically done by most doctors with a hope and prayer they will control symptoms to at least a small degree). This morning, I worked on the mind map before taking any medication for the day.
The fact that I take certain medications prescribed by a very skilled and experienced group of doctors and myself use mind mapping in conjunction with the medication does not constitute medical advice for you in any way. See your doctor if you have my problems or appear to be developing them. You are not me, you may not have the same disorder (if any), and dozen of other factors need to be considered for each individual when medications are prescribed and cognitive behavior techniques are used. Like my medications, mind mapping has not be proven to work in formal clinical trials and the fact that I have concluded that it helps greatly FOR ME, does not mean it will work for you or anyone else.
Neither the medications nor mind mapping will cure my dementia or probably slow it down. That is OK. I use both because I perceive the medications and the cognitive mapping improve my quality of life to some degree. And with dementia, even a few extra good hours or days is an incredible gift.
The video from yesterday covers a 39 minute work period. The video from today covers a 36 minute period. In both cases, I conceived of the idea and then started immediate work on it. I neither carefully planned the map before starting recording and this is the first attempt. No practice was done before turning on the recording program.
My morning dosages of medications usually leave me with a very bad headache which stops in a couple of hours. Since I had not taken medication before or during this video session, I did not have a headache.
Note that both videos use time lapse settings so that 8 minutes are portrayed as 1 minute.
I’ve been writing a lot recently about rare and orphan diseases, especially those that are associated with dementia (which is NOT synonymous with Alzheimer’s disease). Dementia is (obviously) a huge untreatable condition with a huge impact on the healthcare system, both for those with dementia and their caregivers, and those who provide and fund care.
I looked at YouTube today to see how much video information was on the Internet about conditions — Corticobasal Dementia CBD; Frontotemporal Dementia/Degeneration FTD; Progressive Supranuclear Palsy PSP. These are very rare diseases both in the USA and world wide. There are no treatments for any of these conditions although pharmaceuticals are sometimes used off-label to attempt to control symptoms and various behavioral assistance (physical therapy, occupational therapy, speech therapy, case management, support groups, caregiver education and supports) is often offered to improve the quality of life of patients and caregivers.
Most physicians in non-neurological specialties have not studied these conditions nor know much about them.
For the three conditions I examined there were dozens if not hundreds of videos of clinical symposia, caregiver observations, patient interviews and observations, and timelines of the disease progression of individuals and especially a few celebrities.
Especially with rare diseases, where there is not a lot of information in the media for the public to consult, videos on YouTube can make a great contribution to patient-caregiver-professional education and an improvement through education of the quality of life for patients and their caregivers.
What is NOT on YouTube?
I see no assessments of the quality (validity, reliability, applicability) of the videos.
Why not have some professionals look at the videos, and rate them for accuracy. Really. And then create a video.
There is some awesome information currently on YouTube about rare and orphan diseases. There are also huge holes in the aggregate collection of videos in that many important topics are not discussed. And some of the videos are just plain not reflective of current medical standards or state-of-the-art knowledge.
I’d urge professional groups and #YouTube to look at getting a rating system for these videos of all diseases-conditions, and especially the rare and orphan diseases. There are huge benefits of this information but also some errors that need to be fixed so that patients and caregivers in search of a cure where there is none available at this time are not misled.
#YouTube is a huge resource to individuals and their caregivers who must deal with rare and orphan diseases without effective treatments. Hopefully, the videos will be used to educate and support, but incorrect information may unrealistically raise the hopes of patients and caregivers that these diseases can be treated with unapproved medical treatment or ineffective alternative approaches. Or, videos of late stage sufferers from a disease can be extremely scary to patients and caregivers and not permit them to focus on maximizing the quality of the left before the late stages of a disease.
Let’s get some professional video comments from established experts who CAN talk to REAL folks in a way they can understand up on YouTube. Great information should be widely disseminated; incorrect or damaging information should not be allowed to be presented under “freedom of speech” laws without professional comment about probable inaccuracies.
Correct and supportive and understandable videos would go a long way to help patients for whom there are not established and efficacious treatments have the best possible quality of life.
Now that would be a huge contribution. Heck, I’d even give Google a tax deduction (and you will never hear me mention such a suggestion in any other context) for getting accurate and REVIEWED video content on rare and orphan diseases available to all in a number of different languages.
I spent 35 years studying more than a thousand health and social care systems designed to serve the most underserved, disenfranchised, and poor members of our society. These programs were located in 38 states and most major cities of the United States. I think we know what makes a service system successful. Here are my conclusions. And most of these changes are not necessarily expensive to make.
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.
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.
There are lots of different applications of mind mapping methods to such areas as brainstorming, task management, scheduling, journaling, and sharing basic information (great day to play basketball!). Other mind maps may tell us about scientific experiments and theories, political arguments, historical events, anatomical features of the human body, the quality of hotels in Barcelona, or expert rankings of world football (soccer) teams projected to finish near the top in the World Cup tournament. How do you know a real expert has ranked your favorite football teams correctly? How do you know that the student who created the cute mind map of the human body as a subway map actually put in the correct names parts and names? What are the professional qualifications of the “expert” who says the world is flat? Do experts believe the purported expert who drew the mind map? Is the information in the mind map you found and downloaded from the Internet really going to tell you what you need to know for your organic chemistry test in two hours?
I sure hope my doctors studied from factually correct mind maps, not just pretty ones given away by a pharmaceutical company. And (since I have a doctorate in psychology), I am really sick of seeing mind maps that say they contain psychological principles that will make you happier, thinner, less anxious, more sexy, and help you self-diagnose whether you have bipolar disorder and which drug would be best to help you and should be ordered from an Asian or Mexican pharmacy over the Internet (URL at the bottom of the map).
Mission critical information in mind maps should be carefully reviewed by experts in the content of the maps to minimize the number of cases where misinformation hurta people . If such a review has not been done, or if the author of the mind map does not provide adequate credentials to assess professional competence, I recommend you do not use such information for making personal or business decisions. While I love artistic maps that are well-designed and “clean” in their appearance and spend a lot of time trying to emulate the best, adherence (or not) to the mind mapping rules of Tony Buzan and the use of a wonderfully artistic program, in no way does or does not make the information in the maps correct. Think about that carefully the next time you download a mind map from the Internet and try to study or make a business decision; that’s a fact, Jack.
It’s also a fact that these comments also apply to infographics, concept maps, and other information visualizations.
My next post is going to have a lot to say about the importance of content and how to assess whether that pretty map you just found contains valid, reliable, and important information.