If you are a dementia caregiver for a family member or a professional caregiver, I bet I just got your attention. Yes, I really do want you to think about the process of providing care as a scientist would. Observe. Make up some hypotheses. Collect data over some period of time. Analyze your data by looking at your observations and seeing if they confirm your hypotheses.
When you go the doctor with your person living with dementia (PWD), show the doctor some of your “data” and present what you have concluded. See if doctor agrees with you. And in case you wonder, I believe most neurologists and psychiatrists and primary care providers would be delighted to have verbal reports every 3-6 months at follow ups.
Don’t let the words science, data, experiment, analyze, hypotheses, and confirmation scare you.
In practice this is actually pretty simple. Carry one of the ubiquitous little 3×5.5 inch notebooks around with you (Field Notes or Moleskine or Office Depot) as well as a pen or pencil. Every once in awhile, make a short sentence note of what the PWD has been doing as well emotional reactions, interest level, agitation, annoyance, laughing, and other outcomes. Note if the activity was one in which you had to participate and use a lot of energy or if it was an activity that was done semi-autonomously.
You should write down anywhere from a dozen to 50 of these notes in a day. SHORT notes. Write them down when you are not with the person under care, don’t make a big thing out of it, but you keep the small notebook in a pocket. This is not your diary or a diary of the PWD. Rather it is a simple set of observations about what was done when, how everyone involved reacted, how the PWD felt during and after it and how the caregiver felt. Which, if any, of the participants (PWD, caregiver, others) felt great distress/agitation and great interest and happiness.
Every day you should jump ahead a few blank pages in your notebook so you cannot see what you have written already. Don’t look back the first time until at least two weeks have passed
Every week or two (but more often) you should read the notes back a few days or weeks and see if there are some predictable things that happen if you leave your Mom or Dad alone to watch TV or if they are also in the room with others or they did not have breakfast at the usual time or any combinations of the factors. Do you see patterns of people and activities that almost always make the PWD calm and focused and other ones that almost always result in agitation and anger?
As you get into the swing of the research project, every time you go back and review your SHORT notes, you will get a better feel of what does or does not make the situation optimal for the person with dementia as well as for family members and the primary caregiver.
Do you have to take notes? Probably. If you write something short down, you will more accurately remember it and dozens of events that happen throughout the day or week will not get all “mushed together” in your memory.
Oh and by the way, these notes should really be fairly private. You can go back after you observe that your Dad seems to be very happy when a baseball game is on and very agitated when others interrupt the peaceful time and ask him if this is so. But you cannot pull out your notes and say that 72% of the time ….. And you can not use the notes in a punitive way. This latter point is CRITICAL and if you are going to use the data punitively against the PWD or another family member, burn all of your books and stop collecting data. And apologize and be VERY VERY contrite.
To run a great experiment of maximum usefulness to the person with dementia and the caregiver, you need to look at your notes and be objective. Your goal is to find even small things in your notes that can make life better for everyone at least some of the time. And to realize that other things just seem to happen randomly so you should not beat yourself up if your carefully planned outings to the cinema just don’t work because your Mom gets very agitated from the noise level, number of people, and high stimulation from the big screen.
Oh one last thing. If you are a PWD reading this, there is no reason you cannot keep your own research notes and try to find patterns of activities that can help your caregiver live her or his own life better by causing minimal stress to them at the same time you make your own life more meaningful. One of your huge jobs is to support your caregiver, make her or his life less difficult, and express your appreciation.
Let me be very clear. The suggestions in this post are NOT suggestions for treatment nor will the note taking and research process make your any disease process better — notes do not substitute for medical treatment or professional counseling and the level of notes you taking are not part of any type of therapy — but the process of writing down important things and going back and seeing if there are common causes of your moods and social interactions may be very useful.
Here is a mind map with some suggestions for your research project. I hope it works as well for you as it has for me, but there is absolutely no guarantee of that all. And if the process of the “research project” causes any anxiety or other negative feelings among PWDs or caregivers, it should be stopped immediately.
Click the image to expand it.
[Ok, for all of you researcher types who want to nit-pick, yes I am fully aware that this is technically not an experiment or research study but rather an exploratory program evaluation of an emergent model of excellence. But they don’t teach that in 10th grade so I took a few liberties since everyone remembers their high school labs with hypotheses, theory, observations, analysis, and conclusions.]