What Am I Missing?

What Am I Missing? post page

Online Dementia Journal

By Online Dementia JournalOctober 15th, 2020

What Am I Missing?

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by Emily Egerton,

PAC Education Design Consultant


Whether you have been a care partner for days or for years, there are and will be times when personal interactions are challenging and even infuriating. This feels particularly frustrating when a person behaves in a way that is markedly different from how they used to be, leaving care partners more likely to respond with anger than with compassion. 

The main reason behind these difficult interactions is that dementia impacts the brain’s executive control center, the part of the brain that influences a person’s personality, communication, and behavior. This region, known as the pre-frontal cortex, controls a person’s ability to think logically, make wise choices, finish something they have started, see things from another person’s point of view, and have an awareness of how their behavior affects others. That is why brain change in this region can cause variations in personality, the loss of impulse control, and an inability to think logically or empathically.

When engaging with a Person Living with Dementia (PLwD) who acts impulsively, defiantly, or perhaps refuses to interact at all, it is common for care partners to judge their behavior as challenging or problematic and then attempt to stop or fix them before making an effort to understand what's really going on. The reason why this is problematic is because efforts to correct a PLwD’s behavior tend to focus on the symptoms rather than the cause or causes of the problem. Consequently, this leaves the PLwD feeling unheard, unvalidated, or even disrespected. Basically, it is like pointing an extinguisher at smoke and expecting the fire to go out.

When a PLwD exhibits challenging behavior, it is often their attempt to express an unmet need; however, without a fully functioning pre-frontal cortex, effective communication can be difficult if not impossible. Hence, what may appear to be an embarrassing outburst or refusal to budge when you are trying to help is really their way of expressing what they don't like about their environment or what their care partners are doing or not doing to care for them. The next time you find yourself in a challenging situation with a PLwD, take a moment to pause and seek more information about what might be behind the presenting behavior. Instead of reacting to the smoke, seek to understand the fire. It is when you step away from what you see and ask, What am I missing? that a fix to a challenging behavior may be found.


2 Comments on “What Am I Missing?”

  1. Avatar

    This is very enlightening to me. When my loved one’s behavior warranted my involvement (she does not live with me) I was at a loss to understand (despite attempts to learn) why she acts as she does and how to help. My key take away: “what am I missing” and “seek to understand the fire”

    Thank you

  2. Avatar

    My siblings and I have for been caring for my Mom, who is now 92 years old , for several years since she had a stroke. It is our commitment, but with many challenges as we are also up in age. I am 64 and still work full time, married with a husband who also has health conditions requiring my assistance.

    Needless to say, I love my Mom dearly, but do experience many occasions of frustrations, I try very hard to observe and adapt to her progressive dementia. I/we have good and not so good days.

    This article really helps and encourages me. Understanding the actual physical changes in her brain helps me know that my Mom’s actions are not what she chooses but an unfortunate condition of the disease.

    Thank you for sharing

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