Everyone (and their caregivers) probably has different expectations about what it means to live well with dementia. For long as possible and as long as it is safe, your caregivers should assist you to live well in the way that you wish.
This is my definition that I apply to myself. I live well with dementia.
Be reasonable. Try to be independent. Be realistic about the time of others and cost. Be consistent with how much energy you have. BE SAFE. Follow your doctor’s recommendations and your caregivers.
You can do some (or maybe all if you have busy life and lots of energy) of the things shown in the mind model (mind map) below.
Yeah, I confess I presented (or had collaborators present) many hundreds of “papers” or “posters” at professional meetings in the fields of medicine, health, psychology, education, aging and probably some I have forgotten.
Finding from these meeting are OFTEN in the news, especially in the Twitter era.
The bottom-line is that most of the findings are professional meetings should not be trusted by the GENERAL PUBLIC for a variety of reasons known to professionals who attend these talks and some of the press who report them (including the press offices of some fairly prestigious universities who promote the work of their faculty in press releases).
Why? Unless the work is by a team of recognized researchers summarizing major research studies of a team or a lifetime of research, my guess is that about 80% or more of what is reported in the press from meetings is either/all of: a) preliminary work too early to report; b) work done by students and reported as a “training exercise;” c) papers presented to promote the careers of students and their mentors without much concern for how the press might overstate the importance of these self-promotions; or d) junk science.
Conferences promote that the papers accepted have passed through peer review. Well, sort of. At most conferences for which I have participated as a reviewer or chair of the program committee with ultimate responsibility for selecting papers from reviewer recommendations, the reviews have generally been more like driving through the take-out window line than stopping at a fine restaurant.
Reviews for many (but not all nor even a majority of) peer-reviewed journals are acceptably thorough, fair, only semi-politically determined, and sometimes ignore long-term friendships. As for the rest, well you “get it.” The fantasy of unbiased, peer-reviewed science that can be trusted by the general public is one “sold” by the academic research industry rather than a fact for either peer-reviewed professional meetings or peer-reviewed journals. It is true, however, that peer-reviewed journal articles are more likely (probably 35%) to be trustworthy, correct, important, and interpretable by the general public.
Remember that the majority of training in research for graduate and health professionals is to permit the professional reader to separate the pearls from the droppings, even in peer-reviewed work.
Here is a mind model (AKA mind map) about why even the most highly-trained research professionals need to be vigilant to poorly designed and executed research studies coming out of peer-reviewed major professional meetings and peer-reviewed journals.
Be careful and cautious, not quick, sloppy, and stoopid. My personal guess is that more than 75% of the mind maps that purport to present expert information are to some degree partial or full ignorance maps.
If you are screwing around with health or safety or fact maps for which you are guessing what is true or just accepting information on the Internet or from the mouths of either 2016 US Presidential Candidate, consider whether you want to put ignorance into a mind map and place it prominently on the Internet for all to admire its beauty. The health, behavior, and future of many can be affected by erroneous (ignorant and arrogant) information.
A mind model is not just a “super mind map” but rather something more that incorporates many different types of models and mapping methods as specialized cases.
The following image is a “mind model” of selected mind model types that can fall within the domain of mind modeling and all of which can be produced with an advanced mind mapping program. [My preference is iMindMap, but there are other mind mapping programs that are general enough to produce many kinds of mind models, if not all.]
Ever wonder how a mind model differs from the mind map it typically looks like. It’s all about the intent of the diagram and the information that guided its development. This mind model explains the difference.
Dr Rita Jablonski-Jaudon has a really nice article on 10 rules to follow in order to provide effective, compassionate, and comprehensive Alzheimer’s caregiving. Dr. Jablonski-Jaudon is an expert on Alzheimer’s care, and I have greatly respected her judgment over the decade I have known of her work.
The article may be accessed here. Clicking the link will open a new window.
I wondered if the information could be presented in a somewhat more compelling way visually as a mind model (AKA mind map) with a very large (some would say excessive) number of images embedded in the diagram.
So I tried this afternoon. I like the result; hopefully Dr Jablonski-Jaudon will also. Spend a few minutes looking at this and the images, and I suspect you may view caregiving in a somewhat different way.
Note that you should read the original short article either before or after looking at the mind map. There are some further explanations of concepts in the original piece.
Tweets from July 19, 2016. While shortened for Twitter’s character limit, the meaning of these tweets should be fairly transparent. I believe that most of the so-called Dementia “Organizations” or “Charities” need huge restructurings of their operations in order to actually understand and attend to the needs of Persons with Dementia.
If you want to learn about non-profit organization that does its job extremely well (albeit in a different area), search information on the AIDS Healthcare Foundation in Los Angeles. Superb job. Big bang for the buck. And follow them on Twitter at @aidshealthcare.
What can u do with $5/day/Person with Dementia 2 improve lives. My ideas at https://t.co/mfTktKUWId. Where r yours? Let's pool ideas.
I have commented about this idea several times before but the “problem” is becoming far more common for me.
I develop a mind model (AKA mind map) and can go for long periods of time getting down ideas I have had and those I “discover” as I develop the model.
I go away from the window on my Mac and almost totally forget what I have been working on. Heck, sometimes I forget I was working on a mind map at all.
When I open the map back up I can look at it for 10 seconds or less and know immediately what I was doing and recover my train of thought. That is I can LOOK AT IT …
as in LOOK AT IT!!!
This is …
I really do not know what to make of it but I do believe that this is very important and illustrative of how the demented or healthy brain is adapting to other information channels using cognitive reserve and brain plasticity.
I cannot figure out exactly why and how this works but I do observe it is getting much more common as I progress further into neurocognitive disorder (dementia) over the months. I forget but I remember and that maintains a creative process.
I do think this is IMPORTANT and I wish that the research to fully understand this phenomenon could be done during my lifetime, although I know it cannot.
Although research cannot be completed in a decade, one can try these methods for yourself and see if they work for you in the way they work for me. I guarantee nothing regarding whether it will work for you. But if they do …
This is a topic I believe needs to be addressed immediately so other folks facing neurodegenerative disease can use these methods to retain a continuity of thinking on important and complex projects. Note that important and complex projects could be developing a new theory of mind modeling (mapping), researching and experimenting to discover the world’s best recipe for a vanilla cake, presenting one’s own life in a visual autobiography, or making irrefutable cases that Shakespeare wrote Shakespeare or elephants can fly.
A Mind Model is AKA a Mind Map (on steroids and constructed with a little thought about state-of-the-art theory and research as well a consideration of how people of all ages, experience and formal education levels, and cultures best understand information). The Mind Model is a significant improvement over the mind maps popularized and promoted by Tony Buzan.
The odds are, if you are less than 65, you know more about how a personal computer breaks down than you do about how your mind breaks down due to trauma or environmental factors or disease thus producing a group of symptoms we collectively call dementia.
Now remember, we KNOW that computers and brains do not process information in exactly the same way. God did a far better job at designing an operating system than did the 1000s of software engineers (and 100s of billionaires) at Microsoft.
Nonetheless, we can use what most people know about how the computer on their desk becomes internally damaged and obsolete to understand some of the processes of dementia in a summary way. Don’t take it all too literally and for goodness sake, do not try to run your brain on Windows.
A mind model (AKA mind map). Click on the image to expand.
Ever wonder what the difference is between Mind Maps developed by Buzan and Mind Models developed by me. Here is the cheat sheet in a Mind Model. Click on the image to expand it.
The backbone of the dementia care system is the relationship between a person with dementia and an unpaid family caregiver (often a daughter or aged spouse). The family caregivers often hold jobs and typically have a family of their own (frequently with young children). Weekends and evenings and vacations get “eaten up” by caregiving demands as do financial resources and interpersonal relationships with the caregiver’s friends, coworkers, and relationship partners.
At its best, the person with dementia and family caregiver partnership provides excellent care. At its worse (with the exception of a small percentage of cases of abuse or neglect possible in any care relationship), this is the best care system available to most of the population of elders and others with dementia and itself is a high-quality care system.
But the toll on the unpaid caregiver is huge.
In order to make keep this system viable, high-quality, accessible, and fair to all participants (especially unpaid caregivers), stipends and free training needs to be made available to family members. Whether such stipends come from general tax funds or the health insurances pool, if they are not made available, the system will collapse and the alternative will be lower-quality and much more expensive.
Wanna pay more and get less … destroy the system of family caregivers and PWDs by refusing to reimburse currently unpaid caregivers for their services and time and replace it with centralized facilities resulting in poorer care for elders at a higher cost. Paying family caregivers for their work with persons with dementia is not only the right thing to do, it is the cost-effective thing to do.
A mind model (AKA mind map) follows. Click on the image to expand it.
A related posting on caregiving may be accessed by clicking here.
A mind model (aka mind map) on a very important topic in the care of persons with dementia for caregivers and PWD.
Much is written about the responsibilities of caregivers to those family members and others for whom they provide support, care, quality of life, and safety.
Let’s flip the issue over.
I make these suggestions from the viewpoint of a psychologist/healthcare professional who has lived well with dementia for many years. These are general guidelines and do not apply to everyone or possibly to you. But if you can, do think about these suggestions for at least a little time.
In the earlier stages of dementia — while they still can — persons with dementia need to take responsibility for caring for themselves as much as they are able to while doing so safely and consistent with their medical treatment plan as set by a medical doctor or other licensed health care professional.
If you as a person with dementia can still do something safely — or part of it or even try to do a little of it to aid a caregiver — do it. Because you have had a diagnosis of dementia does not entitle you to request assistance when you do not really need it (as determined by you AND your caregiver and doctor). Dementia or any other medical diagnosis does not entitle you to control the life of another nor to ask things of them which are not necessary.
There are things that are not safe for a person with dementia to do even in early stages and you should NOT ever try to do so. Follow your doctor’s and caregiver’s instruction on this perfectly as your judgment may be impaired even though you can still perform many tasks.
And no matter what, you can always try to remember to smile, say thank you, and express gratitude. And try to remember to not be bossy, complain because you cannot have your way all the time (often for your own safety and quality of life), and to stay cooperative, grateful, as relaxed as possible, and aware of the needs of others. As the disease progresses you will be able to do less, but why are you entitled to expect to not help or have to do it yourself at times when you can still do some things safely and adequately albeit not perfectly or as well or as fast as you used to? Do what you can to help. Remember, you are still an adult, even though you have a neurodegenerative brain condition.
I have dementia. Often I need to be reminded to stop being a jerk or being demanding or not trying as hard as I should. I often get mad (who wants to hear it) but over my lifetime I have learned to reluctantly channel that anger into trying harder and when I can, I then do something I was avoiding, I find great feelings of satisfaction both that I can still do many things and also because I cut some pressure from the lives of others who spend much time and energy protecting and helping me when it is really needed.
One final note. This probably applies to only a few caregivers who will ever read this post but it needs to be said. No patient under care should EVER be punished in any way for ever failing to live up to any suggestions in this blog post and mind model.
Click the image to expand.
For a related post on caregiving (opens in separate window), click here.
An old song often sung to children. Somebody over 60 will probably recognize it but may not remember who is singing, although both voices are iconic.
A ditty about tomatoes and potatoes and pajamas and other things we all have slightly different ideas about …
People with dementia and loving, well-meaning, and hard-working care givers sometimes don’t always have the same frame of reference when planning activities or tasks or the day-to-day schedule of the Person with Dementia.
Like Ella and Louis — two American icons — simple understandings can pull the relationship back together.
Here is a little vamp on the song by the Gershwin Brothers in the form of a mind model (aka mind map) about why Persons with Dementia and Caregivers sometimes have quite different expectations about what the Person with Dementia can and cannot do.
Click on the image to expand it.
[Oh… yes, I have dementia. And don’t break my heart.]
When you are dealing with neurodegenerative disease, having a sense of humor helps a lot.
And if you worry that someday you might be diagnosed with a form of neurological disease that leads to dementia, please relax a little and realize that a diagnosis of dementia does not mean your life is over. Many can adjust well with some work.
A mind model (aka mind map) on the occasion of America’s birthday and our usual excesses of firework, pride, beer consumption, capitalistic patriotism, self-centeredness, and feelings that things can change for the better.
By our next birthday in 2017, I hope that we can reach some of the goals specified in the mind model. Please click the image to expand it.
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.