I believe that you can deal best with dementia when you identify activities that make you happy when you do them by yourself. Nobody entertaining you or telling you what to do. Nobody helping you. Nobody protecting you from “failure.”
This is my list of 21 things I do along that make me happy. My list will not be your list, nor should it be. My own list changes frequently as I vary the things I do often.
The list has one big theme to it. Just as you did before you had dementia, do as many enjoyable activities that you can manage by yourself. No burden on others to entertain you; they have their own lives.
A mind model (AKA mind map) is shown below. Click on the image to expand it.
I left point 21 out of the original mind model — in my defense I think that many of my points summed to this — so I wanted to correct the model. Here is a better list (it is the same as the old map with the addition of point 21.
Stop it with the doom and gloom. After finding out that you have dementia, there is usually many years of life left. Are you going to devote it to I Love Lucy reruns or keeping active and enjoying life.
The mind model shown below does NOT recommended activities, therapy, or life strategies. Things do change when you have dementia and you should not make any changes in diet, exercise levels, financial procedures, and most other things without consulting your doctor, your family, and others who might be expert. This is very important because part of your dementia might be having poor judgment in many areas.
The figure is a mind model (AKA mind map) with some ideas that you might consider as you plan for having a full and enjoyable life, even while having to deal with some new things because of the condition. With a little help from your doctors, family, and friends you can get by, and YES, get by in a very good way.
The songs of Joe Cocker often inspire me to stop feeling sorry for myself and get by with a little help from my friends, even if dementia sometimes causes me to sing a little off key.
And in case you forgot, the song was written by Lennon and McCarthy and here is the original sung by Ringo.
In 2010, I was diagnosed with one of the variants of FTD (PSP) in part because I came into the neurology department after a very serious fall coming out of a UNC stadium (fortunately, 100 feet from the UNC Hospital Emergency Room). Later as my gait stabilized, it became clear that the diagnosis of behavioral variant FTD would be a better one for me as the behavioral and decision making symptoms of FTD had occurred (initially, in the years before diagnosis after the fall).
I do have some significant issues with my short term memory, especially of verbal materials (I remember faces but not names), but these are not my primary symptom as memory loss would be if I had young onset Alzheimer’s disease rather than young onset FTD. I have about 500 posts on this blogging specifying what mind mapping (or my more sophisticated variant, mind modeling) does for me. I usually talk about how it helps my decision making and learning of new things, but the natural tendency is to speak of mind mapping as a memory maintenance and enhancement method, which of course it also is. Mind mapping is also extremely useful for understanding patterns of your own behavior and focus on positive reactions to others rather than negative ones.
Here are some of the disorders that make up Frontotemporal Dementia (Disease). All involve a loss of decision making, planning, and judgment (Executive Function). For some the initial symptoms are a personality change while others start by having language problems understanding or producing language. Eventually most people with FTD (FTLD) have all three sets of symptoms. The other diseases (PSP, CBD, FTD with Parkinsonism, FTD with ALS) have initial symptoms of motor-mobility difficulties followed later by the behavioral and language problems.
Mind mapping may be so effective for use with dementia (and specifically FTD) because it is a good way to plan and make decisions, and promote judgment. It forces you to make associations between words and pictures which helps both in producing words and understanding information provided as a mind map better than a written document or verbal instructions.
And it is fun and feels artistic.
A mind model explaining some of these connections is shown below. As a reminder, I only contend that this method works for me. It may or may not work for you and should you choose to try this you should remember that I am only discussing my own observations of me.
When I was a kid we used to go over to my grandfather’s house to watch the Wizard of Oz the one time they aired it each year (the Sunday after Thanksgiving). My grandfather had the first color TV in the family and Wizard was one of the few movies shown in color on TVs in the 1960. In the generation of an LCD TV in every room, and iPad on every lap, and 50 iPhones playing movies on every flight, the kids of today definitely do not relate to the kind of experience it was once a year for 15 family members to sit in the living room with popcorn and my grandfather’s homemade root beer. I sort of recall (perhaps erroneously) that it was the first color movie my mother and my aunts had seen as kids and it seemed that they knew every line (and especially song). In those simple times, they had to have the actor who played the evil witch do coffee commercials so that kids could see that the witch was an actor, not real.
Those of my generation learned some lessons from the Wizard of Oz movie and Dorothy, Toto, the Tinman, the Cowardly Lion, and the Scarecrow. Using some of those less can help live well with dementia. Or any other time you are not in Kansas.
Think of the memories a mind map with a heavy visual component from an older person’s childhood (for example movies like the Wizard of Oz, Star Wars, ET; TV shows like Star Trek, the Brady Bunch, Lost in Space) might bring back through associations.
A mind model (AKA mind map). Click on the image to expand it.
A large pharmaceutical company markets on television what they describe as a “last chance” medication to delay cognitive impairment. Their advertisement is scary and demeaning to persons with dementia who have tried to live well and their caregivers who have provided so much help. It also implies that you are “sicker” than you necessarily are if you are prescribed the medication and that your caregiver may not be doing a good job.
Their advertising campaign has elicited bad feelings in me for years. Now I have a prescription for their medication waiting for me to pick up from the pharmacy.
If I believed their crappy advertising suggestion that the end is near, I would be justified in feeling depressed and giving up. Just because you and your doctor think that their medication MIGHT help make the symptoms of cognitive decline be more bearable does not mean that you are not already living a good life with dementia or are somehow being neglected by your caregivers in spite of what the pharmaceutical companies imply. And with a smart doctor who starts early it does not mean the end is near.
Steamrolling patients and caregivers whose emotional, physical, and financial resources are already stretched probably adds further profits to the already obscene bottom lines, but it is not fair to push people further into feelings of inadequacy, helplessness, and guilt.
Somebody please explain to me why these companies do not need to be further regulated or (inter)nationalized.
A mind model (AKA mind map) of the ways television ads undermine the hard work of persons with dementia and their caregivers is shown below. Click on the image to expand it.
Two versions of the same map are shown. They differ only in formatting. I prefer the first one.
Part 1 of this series can be accessed in a new window by clicking here. Frontotemporal Dementia — often associated with young onset as compared to Alzheimer’s disease and its late onset — has been shown to a potential relationship to artistic creativity among those who have the neurodegenerative condition.
I see my own work on this blog as an attempt to combine artistic impulses with information to potentially help myself and others with dementia.
Nomenclature: FTD is an acronym for Frontotemporal Dementia, the most common form of young onset (before age 65) dementia.
Mind modeling is an advanced form of mind mapping.
Part 2 of this series can be opened in a new window by clicking here.
If I had to use one newspaper article of general interest to describe my fascination with mind mapping while I have frontotemporal dementia, I would select one that appeared in the New York Times in 2008. Interestingly the article appeared while I was in the beginning or middle stages of FTD but before diagnosis.
You can open that article in a new window by clicking the image below.
Here is another article that recently appeared in the Wall Street Journal. I literally just read this article for the first time this morning while doing final editing of this post. I say that this was funny to me because I have started wearing old Hawaiian shirts from vacations to the islands of Hawaii I made in the 1990s and 2000s. [There is a reference in this article by EJ Sternberg MD to a man who with FTD who wore Hawaiian shirts every day.] I do note that I wash the shirts after wearing them one time and that it is in the 90s all summer in North Carolina. Click the image to open the article and learn about Hawaiian shirts, art, and frontotemporal dementia.
There are a number of similar articles on the Internet.
While I have only rarely (as an example of what you could do) set out to create a mind map that was “Art” (with a capital A), I think many of my thousands of mind maps in this blog can be viewed (as incredibly boring and elementary or interesting and mind capturing) “art” (with a lower case a).
I create mind maps as a way to organize thoughts, manage my life, communicate with others, and document the course of my neurodegenerative condition and methods of coping with it. As art, not really, but I greatly enjoy merging colors and shapes and especially fonts with information and VISUAL THINKING. But over five years, I have gotten pretty good (at least in my estimation) in applying the colors and designs and elements of paintings into my computer-assisted mind maps. As my conception of a traditional Buzan-style mind map has evolved significantly, I have also entered another plane of combining information with elements of art to express my conclusions better and worked out a theory of mind modeling that expanded the concept of the mind map. This blog has more than 750 posts and several thousand mind models/maps ALL created since I have had diagnosed with FTLD (formerly as the PSP variant and then as FTD).
You can access my concept of the MIND MODEL by clicking the link. More important for an INDEX of my mind model theoretical writings, click this second link The results open in a new window.
Based on my experience — and my experience ONLY — I wonder if my use of organic mind models (AKA mind maps) with professional experience, observations, data, and my conclusions show how artistic impulses can be combined with mind models as a communication method during various stages of FTD.
Below are some examples of my recent mind models (AKA mind maps). Art is in the eye of the beholder and I hope you have a benevolent eye. Clicking on any of the images will expand its size.
The process of my mind models is described throughout this blog. In simple summary, it takes me 1-2 hours to create one of these mind models (now). When I walk away from the computer I often forget what map I am working on and an hour of two after posting it on my blog I have no idea what my most recent posts were and I have to go to the web site and look at the index. However, when I open a post and look at the map for even a minute or two, I can immediately recover my logic for creating it.
Yeah, it baffles me too even after 35 years of practice as a psychologist doing research on altered states of consciousness (drug abuse and its treatment), imagery and daydreaming, elder abuse and dementia, aging and nursing models, mental illness, neuropsychological testing, and evaluating healthcare and social care.
During this same period of neurodegenerative disease I have become a rudimentary sketch noter, doodler, and sketcher who spends several hours a day “playing” with pens and pencils and more recently watercolor inks and an assortment of typing papers and artist sketch pads. Am I any good at that stuff. NO. But, it does help organize my life and plan and remember. Most importantly, it makes me feel calmer and happy.
Click on the images to expand them.
And I typically make between 10-50 like doodles like the following examples daily, often while watching TV or sitting in my bright kitchen looking out the window. It helps soothe the savage beast! And, I am especially obsessed with color shades.
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.
A lot of things that used to be simple may be difficult for you now, depending upon when you learned them and which skills are required.
If you cannot do some task you or a caregiver thinks is simple, you might be able to relearn it IN A DIFFERENT WAY. The trick is to be able to control yourself and not start doing the task the way that now always fails. Rather you need to identify a different way to perform the task — IF POSSIBLE — and then learn to do that by practicing until it gets to be natural. The Internet is a great source of suggestions. And you should never be embarrassed that you have to do something in an unusual way like eating soft vegetables (peas and lima beans and lots of others) with a spoon or holding a pencil in a different way so you can write faster or bigger. Or taping instructions (with pictures) on the refrigerator or clothes dryer. Or asking Alexa (Amazon Echo) or Siri (Apple devices) to look up information like “what is the weather today” or “what is the news today” or “play music by the Tedeschi-Trucks band.”
It takes me a long time now to look up weather on the Internet. It takes me 10 seconds to ask Alexa or Siri to look it up and read it to me. I use a spoon to eat those sneaky peas instead of not eating my vegetables. I now handle laser printer paper differently (much more slowly) because I got lots of nasty paper cuts handling it in the old fast way.
My list of tasks I needed to unlearn and relearn will not be your list. But the principle is the same. Before you give up eating peas, think about another solution or find one on the Internet or invent one. Practice so it becomes natural.
A mind model (AKA mind map) is shown below. Click the image to expand it.
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.