The Whitworths of Arizona, bringing science to you in everyday language.

Friday, November 22, 2013

Lewy Body Dementia and Eating

Along about this time of year we all think a lot about eating—it’s become a Thanksgiving tradition to have a big meal and eat too much. But our loved one with almost any kind of dementia and certainly with LBD often have problems eating even a small meal. There are many reasons for this:

Everything is slower. It takes a lot more time for a PwLBD to choose what on their plate to eat, put it in their spoon and move it to their mouth. Lewy bodies makes everything smaller too—steps, movements, voice, and the bites a person takes. This makes eating an even slower process. A person with LBD may have just started eating by the time everyone else is finished and then they are “done” too.

When muscles get weaker, eating becomes hard work. Think about what it would be like to lift some stones that are just a little too heavy for you. The first stones would be fairly easy. You’d just need to exert a little extra effort. Of course, that is tiring. And as you get more tired, the task gets harder. And finally, it just wasn’t worth the effort. That’s the way it is for someone with weak facial muscles.

Lewy bodies take away the ability to smell, often well before dementia shows up. (In fact, one symptom of approaching dementia is the “return” of smell in the form of olfactory hallucinations, usually bad smells.) Eating becomes less fun because this loss of smell affects taste and things that used to be favorite treats may not be anymore.

Swallowing can be affected so that it becomes very easy to choke and aspirate—draw food into the lungs. While your loved one may forget a lot they don’t forget negative things as easily. Thus, the fear of choking remains. They remember that when they ate or drank, they choked and became frightened.

As thinking abilities fail, immediate gratification remains but the ability to see cause and effect fails. Thus, with immediate rewards replaced by hard work and fear, your loved one sees little reason to eat.

Then add the poor depth perception and other visual problems that PwLBD are even more prone to have than PwAD. If you can’t see what you are supposed to be eating, how can you be expected to eat it!

But there’s help. In the Alzheimer’s Reading Room, Bob DeMarko suggests that it is as easy as 1,2,3: http://www.alzheimersreadingroom.com/

1.  Use RED plates. This adds some contrast and makes the food easier to see, which can be quite important for anyone with the perception and visual problems common with LBD. People with dementia in general eat 25% more from red plates! (reference)

2.   Be a guide. Your loved one will often mirror your behavior. Use this to help them re-learn to eat:
  • Set a place for your loved one and one for yourself right across from them, in their direct line of sight. Put food on both plates.
  • Sit at your place, look directly at your loved one and SMILE. Don’t say anything.
  • Still without talking, take a bite. Chew. Smile.
  • Take another bite. Chew. Smile.
  • Take your time. Chew slowly. Be patient.
3.  DO NOT TALK.

  • Just make eye contact, eat and smile.
  • Cajoling does not work with a person who cannot relate to reasoning.
  • Talking about other things is distracting.
  • Just make eye contact, eat and smile.
  • Be patient. Be VERY patient and wait for them to follow your lead.
  • This process may take several sessions.

A good guide demonstrates how to eat each and every time (like it is the first time, every time). The good guide does this with a smile on their face and no words in their mouth.

Your loved one may find eating difficult or painful. If this is the case, you need to contact a doctor that specializes with such problems regularly. Speech therapists can also help.

Happy Thanksgiving, everyone!

For more information about dealing with LBD, read The Caregiver’s Guide to Lewy Body Dementia. Order it from Amazon via the LBD Book Corner on LBDtools.com and help us spread the word.

6 comments:

  1. As you explained about using colored plated or smile at them well doesn't help if there clinically blind. it's hard to get her to drink or eat in this stage of LBD.

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  2. Additional disabilities can make your job even more difficult. My heart goes out to you. You don't say what stage of LBD your loved one is in, but if it is the last stages, a person's digestive system shuts down before their awareness does. People at this stage will reject food and if you force it, trying to digest it can be painful. However, if she isn't that far along, I just read a study where staff used touch along with the verbal encouragement I'm sure you are already using to get their patients to eat more. Nothing works with everyone but I do wish you good luck.

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  3. My wife is in the latter stages of LBD in the early mornings she can talk to her self but when I ask her a question she shuts down. doesn't know what I'm asking. doesn't know my name nor her own. she is now eating apples sauce oatmeal mix because sometimes swallowing becomes an issue even drinking. she's always talking to her mom or sister who have pasted thank you for your reponse.

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  4. Try hand signals, facial expressions and such. Shutting down is probably a sign that it is just too confusing to deal with. The ability to communicate via non-verbals lasts much longer than via words. Your wife is likely hallucinating her "visitors." This is normal with LBD.

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  5. can not do hand signals or expressions due to she is clinically blind everything I do has to be word of mouth

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  6. That does make communication difficult. I imagine you use touch too. Have you tried singing? Music uses a different route to the brain.

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