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 have started to add this logo to many of my posts.
Here is what it means.
In 2010 I was diagnosed with a very rare neurodegenerative disease that also includes dementia. I have a mixture of symptoms of Progressive Supranuclear Palsy and Frontotemporal Dementia (many neurologists do not think that these are separate brain diseases). The dementia has features that are different from those of Alzheimer’s Disease in that general memory loss is not as much of an issue in PSP/FTD at the early stages but loss of executive functioning, personality change, social isolation, and other cognitive-personality-motor symptoms are more pronounced at the early stages (like all brain diseases, eventually all of the brain functions are severely affected, although the order of appearance of severe impairment in different brain functions differs among dementia-syndrome diseases). Over the years, my symptoms have shifted and now the working diagnosis is FTD with Parkinsonism or FTLD.
Given that most of the diseases that cause dementia have no cures or even a pharmaceutical means to slow the rate of disease progression (including mine), I concluded that I should use what I had learned in the 37 years since receiving my doctoral degree in psychology to try to employ behavioral-cognitive tools as a way of assisting me in dealing with the stages of disease and dementia. I tried 100s, if not a thousand, apps on my iPhone, iPad, and Mac to list to-do items (tasks), calendar, ring alarms when I should swallow pills, recall the names of long term friends and their children, remember what I had for lunch, and run a continuing social life in a university town with great restaurants and concerts and theater.
Forget the traditional To-Do Apps and Fancy Calendars and Alarms Apps going off in tandem on my Mac, iPhone, and iPad. Forget what people (especially developers) call “dementia assistance” apps.
For me, the one thing that worked was Buzan-style organic mind mapping which in its more general form is really a method of using visual objects (pictures, drawings, tree-like diagrams) to shift to critical visual thinking to retrain the brain to use techniques and areas of the frontotemporal lobe that are relatively unaffected by the brain disease.
I think mind mapping worked very well for me. It did not cure my brain disease (how could a technique of drawing pictures to enable better thinking change the anatomy of nerves and neurotransmitters?). I don’t think it slowed down the progression of my disease (again, how could a cognitive procedure affect how fast nerve cells become dysfunctional and die?). But I do know the mind mapping greatly improved my quality of life because it allowed me to think better, create more than 300 blog posts since 2011, obtain more than 85,000 followers (now up to 100,000 followers 8 months after writing this originally in April 2015) on Twitter, 350 friends on Facebook, more than 1,500 connections to other professionals on LinkedIn, have 750 individuals following my PinInterest boards, and hundreds of re-Scoops from my Scoop.it boards on neurology, mind mapping, and my quirky sense of humor. Oh, and I also WROTE a book about the the mind mapping techniques and how I used them and why I think these worked FOR ME.
I like to think of myself as a working, ongoing experiment in maximizing the value of neuroplasticity.
If you want to see about all of my work, ideas, experiments on myself, and conclusions about the efficacy of mind mapping in increasing my own quality of life during stages of increasing cognitive impairment and dementia, LOOK TO YOUR LEFT and click on one of the “book cover buttons” to order the ebook on the iBookstore (for Apple hardware) or the Amazon Kindle Store (for non-Apple hardware supported by a Kindle app). Read the book and you will know the why and how in a very integrated way that transcends this blog. After seeing the hundreds of images, you will also understand why this book could not be published in a paper format and why the materials all need to be presented together.
Ongoing work is posted on this blog and the work has gotten increasingly more complex in the past 12 months.
More importantly than any of the professional achievements that are more quantifiable mentioned above, I think that mind mapping helped me feel far less anxiety because I could still understand information at the level I had been trained, sparked my creativity, help me behave better in social situations by planning them in advance, and enhanced my ability to function in family and larger social networks. It is the positive effect of being able to better interact with my family for which I am the most grateful.
Here’s a few more thoughts in a mind map. Click it to expand the map. I am very glad I used mind mapping in the five years I have been coping with cognitive impairment and dementia. I did and still do enjoy a very high quality of a life I greatly enjoy.
Click on the image to expand it.
Oh, and one final note … You only get the full benefits of these techniques if you use Buzan-style organic mind maps. Those “maps” you have seen with thin lines, little color or curvature, and a half sentence on each branch, are not the “real deal” and do not produce the same good results as do the Buzan style organic mind mps.
TEN doctors (called prominent in media reports without naming who they were) called upon Columbia School of Medicine to terminate Dr Oz, the host of a day-time medical television show, from the faculty of Columbia University.
TEN physicians, not 100 or 1,000 or 10,000 want him removed.
TEN physicians, not an established medical organization governing members’ ethics, want Dr Oz removed.
TEN physicians, not a state licensing board, want Dr Oz removed.
This article includes a copy of the original email to Columbia from the 10 prominent physicians. This is the only article I could find that included a list of all 10 physicians who want Dr Oz removed.
I am not sure I would consider the vast majority of the physicians who signed this letter to be “prominent.” In fact, I would question the credentials and motivations of all before categorizing anyone as “prominent” or alternately “not qualified to judge.”
I do not like Dr Oz as a television personality. I wish he was not on TV making the recommendations he does. I wish his television show would be cancelled.
BUT, I am not a physician. My opinion is not valid in legal cases. My opinion is not valid in de-licensure or censure hearings. My opinion should not be considered as valid for determining whether Dr Oz belongs on the Columbia medical faulty or not.
At this point, it is not clear to me whether the 10 individuals who signed an EMAIL are qualified to judge his television program to be “quackery.” If so, their complaints are more properly made to licensing boards and professional associations that could issue rulings that would limit or eliminate his ability to provide medical services.
I strongly believe “media” medicine, psychology, etc., should be under continuous monitoring by professional associations and licensing boards.
I personally do not like Dr Oz’s programmatic content (and I dislike the grandstanding and overly directive Dr Phil even more). I wish they would go away and Oprah would stop milking human misery for more and more $s by producing television shows like these. I cannot make a case that there is professional justification for the shows.
BUT, 10 individuals with training in the same discipline as Dr Oz should not be able “shut him down” without review by impartial licensing and professional boards.
Stop giving the man a “trial by media circus.” If warranted, make him accountable to licensure boards and professional associations. If the governing bodies think Dr Oz is a quack, get him off the air. If not, if Oprah keeps him on the air, I will keep calling Dr Oz a Bozo and worse but I would not say he is unqualified to practice medicine if the licensing and professional groups do not conclude he is unqualified.
What the public deserves is a well-regulated and responsible healthcare industry. This is achieved through thoughtful regulation and not through new incarnations of the Salem Witch Trials.
It’s been five years since I was diagnosed with neurodegenerative disease (Parkinsonism; differential diagnosis between PSP and FTD; currently it looks like I have features of both these frontotemporal lobar degeneration syndromes which occur in virtually identical areas in the frontal and temporal lobes of the brain).
In those five years, I have adopted Buzan organic mind mapping as the primary way that I think, evaluate, communicate professionally, and set up even recovery “databases” so I can remember better both events and knowledge from my earlier career and things that happened earlier today. When I am not in front of a computer, tablet, or smart phone running ThinkBuzan’s iMindMap computer implementation of Buzan’s work, I am often using a small pocket paper notebook and a fountain pen to capture my thoughts and feelings and to then organize them.
So how does this make me feel? Look at this mind map to see my experience. Click on the map to expand its size.
Organic mind mapping has been an integral part of my life since 2011.
In Part 1, I discussed the benefits and costs of providing training to Persons with Dementia, Dementia Caregivers, and Healthcare Providers to empower them to use mind mapping methods.
I noted that unlike the traditional trainings given to primarily business users, healthcare workers and patients would need training which covered BOTH how to develop an effective mind map and specific ways to use the mind maps to enhance patient-centered care and patient-provider-caregiver communications and documentation.
I think that the minimal training in aggregate for the three stakeholder groups can be summarized in the following mind map. Note that not all modules (topics) are necessary or appropriate for all three groups.