There are many problems that can plague a person with dementia. Some of these are easily detected but others may be “hidden” because of the nature of the major symptoms of the disease or “hidden” because the person with dementia (or caregiver or in some cases family members) is trying to hide some of the problems from outside observers.
For instance physical, psychological, or financial abuse will be hidden by the abuser and perhaps the person with dementia. Memory loss may make it difficult for the person with dementia to accurately report accidents.
It is important that healthcare providers, caregivers, and family members be trained to identify the hidden problems.
To some degree or another, it is likely that most persons with dementia have some of these hidden problems. For instance, I bump against things all day long, usually because I am rushing around or not paying attention because I am trying to multitask. When asked by a family member or friend where the bruise came from, I have to try to reconstruct where the accident must have happened by thinking through a lot of alternatives for a bruise half-way between my ankle and knee.
A mind model (aka mind map) on the way that ideas hit you when you have dementia.
In a group, the need to say something immediately before you forget it often takes a backseat to etiquette rules of waiting for your turn to say something and not interrupting. If you are talking to someone with dementia, consider cutting them slack and letting them jump in when they can. If the group won’t let the person with dementia break in it can lead to both a sense of frustration for all and quite frankly, the loss of some good ideas and interactions.
The current rules of etiquette do not take account of the fact that some of the participants in an interaction will have severe cognitive impairment or mental illness that pretty means that if a thought is not expressed immediately it will be forgotten.
Sometimes rules need to be stretched or curved (like a railway track) and patience exercised. This is one of those times.
f I am trying to blurt out an idea to you, believe me that if I don’t say it immediately it is going down the track far, far away from me. And it may not come back for another five minutes (if at all).
I have been a HUGE fan of the Olympics since I was a very little kid. In 1984 I got to go to the Olympic events in Los Angeles every day for two weeks, on many days with my father. That was the year that the Soviet Union boycotted the games because the USA had boycotted the Moscow Olympics in 1980. Heck, I thought it was great — the USA and East Germany (who came) won all of the gold medals! Months earlier when local pundits in Los Angeles said Los Angelenos were too apathetic to purchase expensive Olympic tickets especially with the Soviets and most of the Eastern Bloc boycotting as it would not be a real sporting event, I had bought as many tickets for the “finals” as I could get my hands on. Later I sold the extra tickets as Los Angeles fell in love with the games. I made so much money that the expensive tickets I had bought for the entire family of 7 that we used ended up were effectively free since the profits covered the cost of the tickets we used. Street enterprise at its best. My tickets became worth more because the Soviets didn’t come as all Americans became Olympic fans the year we won all the golds.
Winning the race to live well with dementia is like running the 10K race at the Olympics. Everybody has to pace themselves at the beginning so that they can learn about their opponents. In the final stages of the race they speed up and sprint their fasted the last 200 meters.
A mind model of the dementia race strategy is shown below. Click the image to expand it.
I think I am winning my race to live life to its fullest while having dementia. I’m getting ready to claim that gold medal. You can win your race too. Think about what you are doing and strategize like a 10K runner. Learn all you can in the beginning and then speed up later as your new knowledge kicks in.
I expect to be adding a lot of posts about (or using) sketchnotes in the next few months to Hubaisms.com. Here is how to find the existing ones and the ones I will add. The information as a sketchnote. Click on the images to expand them.
Click on image to expand. Estimated time to develop for a NOVICE (me) = 15 minutes. The sketchnote was drawn by a person with dementia (me).
[Note. I usually write/draw note panels like this from right to left in sections because I am left-handed and it minimizes the amount of smeared ink. There is no magic in this, so use any organization that works for you.]
Sketchnotes are one of the most powerful tools for developing visual memory systems for everyone.
I have blogged about them many times. For me, the limiting feature has always been the (low) speed at which I can draw simple figures for inclusion in the sketchnotes, the (poor) quality of them.
I discovered a brilliant little book by Mauro Toselli (@xLontrax at Twitter and Instagram) which broke the barrier for me. The book is titled “100+1 Drawing Ideas for Sketchnoters and Doodlers” which was recently published (2016). The book is available at the world’s largest online bookstore in many countries. Toselli is the co-founder of the web site http://www.SketchnoteArmy.com where is is a very active editor, sketchnoter, and promoter of sketchnotes.
The book contains quick instructions for drawing attractive “icons” or “cartoon figures” especially useful for inclusion in Sketchnotes. In 60 minutes you can break the barrier to having effective sketches in sketchnotes even if you have minimal artistic talent like me. The 100+1 examples can be generalized into 1000s of related figures; for instance his example of quickly sketching a lion can be pretty easily adapted into sketching my dog, a bear, or a cat.
Highly recommended. Inexpensive.
I consider sketchnotes to be a natural complement and alternative to mind models (aka mind maps), and this book will help you use small sketches quickly and attractively in sketchnotes. I have found nothing better although I have purchased more than a dozen introductory sketching books in the past year.
Just get this book if you are serious about sketchnoting for any application. Sketchnotes work wonderfully for me — they are compelling, attention getting, and help organize information. As a child I made notes like this but was quickly trained out of doing so by the education system pushing me into the old staid outlines and none of these “scribbles” in the margins. I wish I had ignored all of the teachers and continued sketchnoting 57 years ago (when I was 8). Oh well, you can teach an old horse new tricks (or at least to return to the pasture), and I now know recognize sketchnoting as an extremely powerful technique for everyone to learn.
As a note, the definitive (and easily accessible, more general) books on the overall technique of Sketchnoting are by Mike Rohde. Search for “Rohde” on this site (the box at the left margin on every page of the blog) and you will find a number of posts where I have discussed Rohde’s seminal work especially as it applies to people with dementia.
HIGHLY RECOMMENDED BOOK as are all sketchnotes and blog posts by Mr Toselli. Toselli has written a brilliant book and tweets extremely effective sketchnotes of special interest because he works on important social issues.
The back cover of the book expresses brilliantly one of the basic “rules” of sketchnoting. I’ve added a few of my annotations.
I am not sure that either candidate for POTUS in 2016 has said even three things that are true. With these two, they shade every statement they make with such hidden, self-serving messages that voters have no idea what they are really voting for. During my voting lifetime (starting in 1972 when I was 21), there have never been two candidates who both regularly tell so many lies, half-lies, right-lies, left-lies, tax-lies, discrimination-lies, immigration-lies, conflict-of-interest-lies, wealth-lies, health-lies, and foreign-tie-lies.
These two make Richard Nixon and Bill Clinton look honest. And that is a very hard thing to do.
There are many ways to greatly dementia care that are very inexpensive. Web sites need to be brought to higher standards for their materials, and the sites need to be more friendly to persons with dementia and caregivers. More support groups are needed: there are almost none for people with non-Alzheimer’s dementia. This whole blog is about using visual thinking methods for streamlining dementia care. Some may find the suggestion that clergy and their religious congregations can provide huge amounts of help is controversial. I do not think so as many persons with dementia and their caregivers turn to spiritual leaders for counseling in times of medical and interpersonal crisis. Clergy need to have access to the most recent information available on dementia to share and explain along with referrals to agencies and professionals who may also provide information and social services. Dementia-friendly religious services for those with dementia are rarely, if ever, provided. Special religious services tailored to ensure the age, medical, and cognitive disabilities of some congregation could be provided on weekday afternoons.
I note that most of the ideas I have suggested are currently being implemented in various locations. We need to make these methods globally available. And we need to greatly increase the quality, quantity, and usability of information available to those who want to provide dementia care services.
These ideas are very inexpensive to implement, and in most case largely consist of assisting those already work hard on these issues.
A mind model (aka mind map) is shown below. Click on the image to expand it.