This post is about the hardest part of dementia for me to deal with. I present my ideas as a mind model (a simpler version of mind model is the mind map). Mind models (and maps) help me greatly in dealing with various parts of the dementia complex.
I have a type of dementia for which severe memory dysfunction does not appear until late in the course of the underlying frontotemporal lobar degeneration (FTLD). The earlier symptoms are personality change and decline in executive function.
By far, from my experience, the defining part of my neurocognitive disorder (dementia) is the experience of disrupted executive functioning. I often cannot decide what to wear, whether I want to go to a group dinner or not, what color ink to put in my fountain pens, how to efficiently schedule my time, how to prioritize what is most important, and other related tasks. I often cannot definitely evaluate information for its validity, importance, and veracity. This is especially true on new day-to-day tasks rather than professional information which I largely accumulated much earlier life.
Most of the highly developed skills I have great difficulty with are ones that tend to be associated with the behaviors and cognitions that allowed me to run a company, make professional decisions, develop long-term strategic plans, evaluate people and programs, and function creatively.
Not being able to at least perform executive functions at least moderately well can drive me nuts as performing them superbly was a huge part of my professional identity. Given that there is no current way of healing the brain and restoring these functions to their original level of effectiveness, the only alternative way to cope with these is to use alternate methods to make decisions, plan, evaluate, analyze.
I can deal with the fact that I may not remember your name temporarily if you are a family member and permanently if I met you yesterday. A good coping strategy is to simply ask the person their name. Another is to have information stored in various forms (pictures, lists, concert tickets, mind maps) so that you can recall information.
Executive functioning is a different matter. There are no established assistive methods for helping deal with the partial loss of executive function. So I have been experimenting and discussions of the results have become more than 400 of the 650 posts in this blog since 2012. So far as I know, my work is the only systematic attempt to supplement damaged executive functioning with alternate methods of manipulating information.
Here is a mind model (AKA mind map) about how a damaged set of executive functions makes me feel and some strategies — discussed in MUCH more detail elsewhere in this blog — that help ME. I feel a lot better when I use the tools I suggest and I believe I think much better too. Were it not for these alternate methods this blog would not have been possible nor many of my other projects.
I will however still face the “what to wear” and “which ink to put in my fountain pen” decisions tomorrow morning. But even partial control makes me feel calmer, more in tune, more my former self, and more productive.
I cannot guarantee that any methods I use will work for you or the person for whom you may give care. Many empirical studies are needed to test efficacy for large groups of people. I do believe they work for me, and I know that they are inexpensive. These tools are not treatment (your brain is not going to change) but rather potential assistive devices like a cane or handrails in the bathtub or a dog for emotional support. Trying some of what I do may be a good suggestion for you. I do not know if the methods will work but I do know that the methods are in most cases very inexpensive often requiring just a pencil or pen and some paper (the eco-aware can use the backs of enveloped).
A mind model of what is hardest for me to deal with in dementia and how I try. Please click on the image to expand it.