This article was provided by Teepa Snow, MS, OTR/L, FAOTA

What happens when you notice your abilities aren’t what you expect them to be? Do you find you are surprised by others’ reactions? Are some outcomes unexpected and frustrating? Is it taking a lot more effort to do something that used to be simple?

It turns out different people have different reactions and responses to changing abilities and situations. It can depend on the type or form of dementia that is being experienced. It is also possible that reactions will be based on lifelong patterns and habits when confronted with a surprising situation or outcome. It turns out that human beings vary greatly in how each of us reacts when we uncover a difference in what we believe is going to happen and what actually occurs.

Some of it comes from our hard-wired neurological structures, our DNA and how it activates. Some of what we do in a crisis or surprising situation is based on DNA patterns that are genetically coded in, from prior generations, like a blueprint. We may simply not have some wiring or specific wiring that triggers a certain reaction or reflex when the brain sees a crisis or emergency alert. An example might be, having a genetic coding for seeking out others for support versus hiding perceived difficulties, to avoid being seen as inadequate. Others might react to the same situation with laughter and humor and acknowledge a mistake or they might argue and dismiss the risk as unimportant or minimal. A different genetic code might direct someone to seek comfort. That person might get something to drink, eat, or do something that relieves the sense of stress/distress by moving into something that feels better without dealing with the situation at all.

There is another aspect of why we do what we do, in an unexpected situation. When we find ourselves unable to cope as well as we thought we would, it can be due to significant life experiences. If we have been saved from disaster or problems by reacting in a certain way, our brain will build a shortcut path to relief. These pathways have developed in our brain to allow for a rapid and non-thought-mediated response. A quick, knee-jerk reaction to take care of potential risks or threats without having to think them through. The tricky part is if the situation does not result in a helpful outcome. Can the brain re-wire or does it just keep using the old wiring regardless of what actually happens? This second pattern can cause others to see you as unaware of the changes. It can cause them to become concerned about your perception of risk and benefit.

Yet another possibility has to do with feedback patterns coming from role models or people we watch and learn from. If we see that someone around us gets a certain outcome based on some typical behaviors or patterns of behavior, we may try to copy them so that we can get the same result. If it works, our primitive brain will earmark this pattern as a keeper. Others may think this is being done on purpose, when it is actually an automatic pattern being used by the primitive brain to fix a problem.

Here are some of the reactions that are possible in a situation where you feel inadequate or your brain notices a challenge in capacity, whether you cognitively realize it or not.

Freeze – you react by stopping
Flight – you move away and then avoid similar situations
Fight – you get frustrated, angry, blame others
Hide – you go away from others
Seek – you look for someone to take over or help

Patterns we use may intensify or change as dementia develops. Noticing changes can help everyone involved begin to figure out what is happening and what might be helpful versus harmful. Sometimes becoming more self-aware is possible when there is better support. If someone can help us try out different patterns with limited risk, it might provide a new pathway for our brain. We might feel safe enough to look at ourselves with a friend. Especially, if that friend can help shine a light in places that are not clearly visible and is willing to back off and give us space when looking too closely hurts or scares us.

As dementia changes things, becoming self-aware is often one of the greatest challenges everyone involved will face. When am I good to go and competent to do what I think and believe is right for me and those around me, and when might I need assistance? It is often an ever-changing target for both the person living with dementia and anyone attempting to provide support or help. Knowing how and when to pause and when to push ourselves or question others, is critical but more assuredly, not easy or automatic.

Snow provides education, training and resources about dementia to help people understand why changes are happening and how to support those living with brain change in a more positive way. Snow will be bringing her expertise to Masonic Homes Kentucky’s Louisville Campus on Wednesday, July 26.

June 14, 2023