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Wrapping Our Heads Around Dementia

by Marcia Wilson

It’s confusing. It’s frustrating. It’s complicated. It’s hard to understand and it’s not fair! And you’re the one with the functional brain; just imagine what it’s like for your loved one, friend or boxer with dementia.

While slower processing of information is not uncommon with Parkinson’s disease (PD), it doesn’t generally present a great challenge for coaches and cornermen (caregivers).  Medications, urinary tract infections, depression, thyroid, and hearing issues can impact cognitive ability, but there are solutions for those issues and you can get your brain back.

Dementia is a different beast though.  Dementia is a blanket term for over 80 conditions. While Alzheimer’s is the most common disease we associate with dementia, Lewy body dementia and Parkinson’s disease dementia are often under-diagnosed. Getting a thorough evaluation and proper diagnosis for your loved one is critical. Then your best bet is to get your head out of the sand and educate yourself on the brain, because the more you understand what’s going on, the better you can cope with it.

So the bad news is that we are not just talking about memory loss. Teepa Snow, MS, OTR/L, FAOTA, does a beautiful job of describing the pathology of the brain and calling dementia what it really is: brain failure. And there it is.  We understand heart failure and kidney failure, but it’s hard to wrap our heads around brain failure.

The brain is who we are. It controls our impulses, logic, self-awareness, timelines, sequencing, hunger, thirst, sleep, ability to fight infections, all of our senses and functions. And, as of now, there is no fix for it – dementias are progressive. There are free videos on Teepa’s website: www.teepasnow.com (no hyperlink in printed publications) that are very helpful. The videos are not long, and if you are on the front line either as caregiver or coach, this information is invaluable.  If you understand how the brain is physically changing, it’s easier to remember that your loved one or boxer is doing the best they can.

The good news is, once you arm yourself with an understanding of the brain and accept the fact that your new normal is going to be anything but, you can focus on what your loved one still has instead of what is lost. Okay, it’s never going to be easy and just when you figure things out something will change. If you can learn to embrace the good moments, tolerate the difficult ones, and ask for help when you need it (or before you REALLY need it), you can make a big difference in the quality of each day.

Here are a few basics for coaches and caregivers to think about:

  • Take a deep breath, and let it out slowly. Do it again. When you are stressed YOUR brain isn’t working well and those breaths will help you make better choices and help your blood-pressure.
  • Denial is not your friend. The more you know the more equipped you will be to take things in stride.
  • You are the one with the more functional brain – use it! Get creative, be willing to change direction if necessary.
  • The brain is complicated – with dementia some parts of the brain work, some don’t. It’s like a short in a wire, one minute the connection is there and the next it’s gone. Don’t assume that because your loved ones understood something one minute ago that they will understand it the next.
  • You can argue, get upset or impatient, but that won’t help your loved ones or you. They are doing the best they can and if you show frustration it will just set them back even more.
  • Try not to say things like “remember” or “I already told you.” Any information is new to them at that moment and it’s frustrating and embarrassing.  Their reality is different from your reality, but it is very real to them.
  • Look at the eyes, at the body language. Be calm, smile, find a way to redirect if possible.  By the way, they will notice your body language too!
  • Always talk to the person, not around them. Let them be part of a decision (hint: whatever you say last is likely what they will choose).
  • Talking louder only works if the person forgot their hearing aids.
  • Remember, there is someone still in there, and especially with Lewy body or PD dementia the brain can scramble or unscramble at any time. Don’t ever treat them like a child or assume they can’t understand.  Dignity is important.
  • Explain as you go – sometimes that helps the moment make sense.
  • Never lose your sense of humor. Wardrobe malfunctions are not uncommon and sometimes just helping someone hitch their pants up a little solves a movement issue.
  • And perhaps the best reminder comes from the book Learning to Speak Alzheimer’s. Repeat this to yourself as often as necessary: “You can’t reason with someone who does not have the ability to reason.”

The more you learn, the more rewarding it is to be able to feel that you are giving your loved ones or boxers some good moments, some good movement, some satisfaction and confidence, some laughter, and some fun.  It doesn’t matter if they do everything you want, it matters that you make the most of whatever they can still do.

Resources and recommended reading:

Teepa Snow, MS, OTR/L, FAOTA, www.teepasnow.com

Mind, Mood, & Memory, a free publication from the National Parkinson Foundation

Learning to Speak Alzheimer’s, by Joanne Koenig Coste

The 36-Hour Day, by Nancy L. Mace, MA and Peter V. Rabins, M.D., M.P.H

Marcia Wilson, MA, Gerontology and Coach at RSB International Headquarters. She has been with RSB since 2010 and is loved by all the boxers in her classes.

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