A Caregiver’s Guide to the Brain and Behavior

If the brain were so simple we could understand it, we would be so simple we couldn't.   - Lyall Watson

Yes, pretty pithy for a Monday, but oh so true. In our daily lives, we often don’t connect people’s behavior to their brains. Behavior – and the emotional ramifications that accompany it – is an abstract concept we can’t really touch or quantify, right? Yet the relationship between the brain and behavior is more complex than we often appreciate.

When I managed a regional office of the Alzheimer’s Association, I met with countless caregivers who were struggling to understand why their loved ones were acting differently. It broke my heart to see their pained expressions as they asked me why someone they have known for decades would start treating them differently or no longer understood how to perform simple chores they had done for years. It certainly felt like they were doing these things on purpose, yet the disease process in the brain was to blame.

Once these caregivers understood the brain-behavior relationship a little better, they could approach caregiving with more confidence and compassion. If you are caring for someone with a condition affecting the brain, such as dementia, a stroke, or a traumatic brain injury, I offer these nine insights into the complex connection between behavior and the brain.

Courtesy of NIGMS, Arthur Toga, University of California, Los Angeles

Honor the Power of the Brain

The brain is the source of our thoughts, actions, emotions, and character. Its contents are intricately shaped by our environment, and healthy people can harness powerful control over those contents. But everything we experience in life, and every decision or action we make, can be pinpointed to some remarkable neuronal locale in our brain.

“Brain” is the Operative Word in a Brain Disorder

Although society is increasingly recognizing Alzheimer's and other dementias as medical conditions, many still believe these conditions are simply psychological weaknesses. This stigma is dangerous because it suggests that these conditions are “brought on” by those affected and, therefore, their own fault. This is simply not true.

A Brain Disorder Can be Pervasive

If the brain affects thoughts, behavior, feelings, and personality, then naturally a brain disorder is going to affect how your loved one thinks, what she feels, who she is, and what she does. Remembering this simple fact can do wonders in the midst of caregiver stress.

“But He Doesn’t Look Sick”

Does this sound familiar? Brain disorders may or may not change your loved one’s appearance over time, and our culture tends to extend its sympathy to those who look physically ill. Your colleagues, friends, neighbors, and even family members may not believe things can be that difficult since the person in your care looks just fine. This can also create feelings of confusion within yourself. Try to remember that a person doesn’t have to look sick to have a verifiable physical disorder.

Prepare for the Unpredictable

Depending on the type of dementia or injury, the condition can affect different parts of the brain at different times and at different rates. The analogy I often use with caregivers is a loose light bulb. Because not all of the internal connections are as intact as before, it’s hard to predict when the light bulb will work. Although many brain disorders progress in a moderately predictable way, the steps are not always clear cut, and they often overlap.

Break it Down

When you are caring for someone with a dementia or brain injury, tasks that seem simple to us may be pretty overwhelming for your loved one. Another analogy I use with caregivers is the act of brushing our teeth. We think of this as one task, but tooth brushing is actually made up of many steps (picking up the brush, removing the toothpaste cap, etc.). If a brain disorder has progressed so that it’s difficult to remember these steps or complete them in the right order, the task will be met with failure unless you break it down for the person into smaller actions.

Remember the Source

This may be the most crucial thing for caregivers to remember, and it builds upon the first six ideas:

Behavior challenges among people with brain disorders are caused by damage to the brain and are not something they can control or prevent.

Write this down if you need to, and keep it in your wallet, your Bible, your smartphone, or wherever you will find it easily.

Accept, Don't Argue

It can be extremely difficult, if not impossible, for someone with dementia or a brain trauma to learn, understand, reason, or remember. Because arguments can only occur between people who can reason and use logic, trying to convince your loved one that you are right is futile. Instead, validate his feelings and provide comfort. You can also redirect the person to a pleasant activity such as taking a walk or reminiscing about old photographs.

Beware of the PLST

Huh? Bear with me, here. People with dementia and traumatic brain injuries often experience a progressively lowered stress threshold (PLST). This means the amount of stress their brains can handle decreases over time. In other words, they become distressed more easily and are less able to explain why they are distressed. Watch for subtle signs of physical and emotional discomfort, such as pacing (he might need to use the bathroom), rocking back and forth (he may feel hungry), or fidgeting (he might need something to do). Learn what triggers your loved one's stress reactions so you can avoid them when possible.

I’d love to hear your thoughts on these nine ideas. Are they useful for you as a caregiver? What would you add to the list? When I talk to caregivers about these ideas, we often note that understanding and compassion are key elements in caregiving when the relationship between the brain and behavior is compromised.

It's a poignant concept that seems to represent the other nine coalesced into a simple truth:

Brains, like hearts, go where they are appreciated.   - Robert S. McNamara

Comments

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  • I am looking forward to every blog you write. So glad you are here on Chicago Now and writing about such an important topic. XO

  • In reply to Nicole Knepper:

    Thank you so much, Nicole! I'm grateful for the opportunity and for your kind words.

    Take good care,
    Dr. Chill

  • Agreed. This is fascinating and important. What a simple, crucial thought -- saying "Get over it" or "You don't look sick" to a person with a brain development... You may as well be saying "Lung cancer? Just stop doing that."

    I've had a few medical issues in my past, and would point out that the lower stress threshold eventually became present for me as all that accumulated. So I suppose that brain issues can develop even if there's something wrong with another part of your body. Keep some of this in mind for anyone who's sick.

  • In reply to Dan Bradley:

    Dan,

    Thank you so much for your comment. That's an excellent point regarding the emergence of a progressively lowered stress threshold for anyone dealing with an illness. Being aware of this can help generate compassion and understanding for those struggling with a variety of health issues.

    Take good care,
    Dr. Chill

  • This is an excellent piece! My husband is 57. In December, 2009, he was diagnosed with Mild Cognitive Impairment, which may or may not progress to Alzheimer's. While he is doing very well, and for the most part remaining stable, there are still changes in his behavior from a few years ago.

    You are completely correct when you say, "But he doesn't look sick." I have heard that many, many times, sometimes followed by, "Are you SURE he's REALLY got a problem?"

    Thank you for this informative article. I blog about my family's life on www.caregiving.com where I write about what life is like for my husband, myself, and our teenaged son.

  • In reply to gjandfamily:

    Dear gjandfamily,

    Thank you so much for sharing your story and for your kind words. I will be sure to read your blog, as I think that MCI is often misunderstood and it's incredibly valuable to hear from families who are living with it. You are doing a great service by sharing your perspective.

    Take good care,
    Dr. Chill

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