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:

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.

  • 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 and help us spread the word.

Friday, November 15, 2013

Making Holidays Fun

The holidays can be a difficult time for anyone with dementia. Change is scary and so as home d├ęcor changes, it adds tension instead of peace. Visits from family and friends can be overwhelming and tiring. For someone with Lewy’s sound and vision sensitivities, it can be even more difficult. Bright tree lights may be painful instead of fun. Loud music may be more stressful than enjoyable.

This doesn’t mean you should not celebrate nor that family and friends shouldn’t visit. Here are some tips to make your holiday season more enjoyable.

Strange places and too many people are both stressful. Therefore, forgo parties and large dinners that include your loved one. Instead, encourage family and friends to come visit—a few at a time.

Time visits for when your loved one is most alert. It is common for them to display “Showtime” (be unusually alert) with family, especially with those they do not see all the time. Enjoy this but expect them to crash and be very tired afterwards. Showtime is hard work!

Utilize respite care or adult day care to give you some free time for errands. If you do take your loved one out on an outing, plan ahead, avoid crowds, make sure it is something well loved, and don’t be gone a long time.

Play soft, soothing holiday music. Music has a different path to the brain and people can remember it when they can’t remember other things. Remember that music played too loud may be distracting and stressful.

Variety and change are no longer fun; sameness feels much safer and more comfortable. Therefore, don’t overdo the decorating. Keep your home looking and feeling familiar.

Get your loved one involved in the holiday preparations. Repetitious activities that are tedious for others are soothing for someone with cognitive impairment and can stroke feelings of accomplishment and pride. Enlist the help of older grandchildren and make this a family activity.

String garlands. All that’s needed is a long heavy thread and a darning needle. Try stringing cranberries, popcorn, even O-shaped cereal (Fruit Loops are cheerfully colorful). Extend the enjoyment by hanging edible garlands outside a window to attract birds.

Make paper chains. This takes some dexterity. It may be that a child can supervise while your loved one helps as able. Use construction paper, or even heavy foil wrapping paper.

Make pomanders. (aromatic balls) Stick cloves into oranges. These make lovely hangings or bowl displays and their scent may evoke calming, happy memories. Again, these require a little dexterity, but not much. Remember to throw them away after the holidays.

Crack nuts. Put your loved one to work with an old-fashioned nutcracker and a big bowl of walnuts, pecans and Brazil nuts. The ability to separate nuts from shells will depend on how much sequential ability is left. This may be another chore best done with a grandchild.

And finally, give yourself the challenge of matching the tempo of your loved one. Release some of that holiday generated stress by slowing down. Think about all the things you can leave undone instead of all those that need to be done.

Thanks to for many of these ideas.

Read A Caregiver's Guide for Lewy Body Dementia for more help with Lewy body dementia. Find it at

Friday, November 8, 2013

Tests for MCI

More and more we are learning that the earlier LBD is identified, the better it can be treated. Then patients, families and physicians know avoiding Lewy-dangerous drugs, emphasizing a healthy lifestyle and focusing on lowering stress decreases symptoms. A diagnosis of mild cognitive impairment (MCI) is a reminder that these changes are also important dementia prevention tactics.

The research community has begun looking at neurological disorders much sooner too. Their challenge is to find signs of a disorder early enough to stop or at least decrease its progress medically. So far, they haven’t been very successful but they are getting closer. One thing they have done is to develop ways to identify MCI early on and even to tell the difference between the AD type (amnestic MCI or MCI-AD) and the LB type (non-amnestic MCI or MCI-LB).

In our 4/19/13 blog, I reported on a fairly new MRI test is now available to help physicians differentiate between several types of dementia, even at the mild cognitive impairment (MCI) level. Called the STructural Abnormality iNDex test (STAND) test, it provides a diagnosis similar to that of a highly skilled behavioral neurology specialist practicing in a large referral medical center. Thus a physician who sees only a few people with LBD a year can still diagnosis it as well as a neurologist who sees many such patients a year, as long as they have access to this test. The problem is that as yet, the STAND test is only available at large teaching or research centers where the specialists already are. Even so, it is worth asking for if you or your spouse/caregiver/family member see evidence of Lewy bodies.

A Lewy-savvy doctor can already identify the likelihood of MCI-LB during an office visit, using a battery of tests including the MMSE, below, and some drawings. The MMSE is given and scored with an emphasis on orientation. Then the patient is asked to a) draw a clock with a designated time showing and b) copy a picture of a cube. (Reference)

The Mini-Mental State Exam (MMSE), which takes only a few minutes in the doctor’s office has a good record of identifying dementia in general. It requires other tests to identify MCI-LB. While the SPECT test below is more accurate, it is not available in a doctor’s office as are the drawing tests above.

The single photon emission computed tomography (SPECT) test is a combination of CT and an injected radioisotope to produce a 3-D image of your brain. It has been found helpful in identifying LBD specifically even in early stages. The process requires special training for administration. While CT scans are available in most hospitals, radioisotopes have a short life and are therefore only available where they are manufactured, i.e., in large medical centers.

For more about LBD, read A Caregiver's Guide to Lewy Body Dementia, by Helen and James Whitworth. Available via our website,

Friday, November 1, 2013

Two of a Caregiver's Best Friends: A Journal and a Support Group

“Now I’m supposed to keep a journal?” Claire, a fiftyish woman with a harried look asks incredulously. “As if I have time for that when I’m doing all these other things I have to do. I don’t understand why Leon can be so like a two year old, getting into everything and so dependent I can’t even go to the bathroom alone and then when we go to the doctor, he’s just fine. No wonder the doctor doesn’t do much. Why does Leon do this? I get so mad at him. Why can’t he be that sharp with me? Is the doctor more important to him than I am?”

“Of course it isn’t just the doctor. He did the same thing when his daughter, Julia, came to visit. I’d been telling Julia that I was at my wits end with her dad. That I needed her to help me decide what to do about him. And so she came to visit him. Guess what? Now she thinks I’m bored with her dad and that I want my freedom without the hassle of a divorce. ‘Or why else would you want to put away such a gentle old man?’ she asked me. Gentle? He got so angry at me the other day that I thought he was going to hit me. He was sure I was setting up a date with some guy on the phone. It was a perfectly innocent discussion with a salesman but I couldn’t convince him of that. He remembers things like that, but he can’t remember from one minute to the next when I do something nice for him. Now he’ll probably tell Julia I’m running around on him. I’m at my wits end.”

Claire is dealing with fluctuating cognition, a hallmark symptom of LBD. It’s her first time at a support group and the group members have suggested that she keep a journal so that she can have a record of her husband’s fluctuating behavior. Her reaction is a common one. She isn’t receptive to adding another task to her already overwhelming caregiving job. Claire expresses many issues that new caregivers have:

  • She takes Leon’s fluctuating cognition personally. This is a hallmark symptom of LBD. A person can carry on an intelligent conversation one moment and be utterly confused the next. (See the x blog for more about this symptom)
  • She doesn't understand the special “Showtime” aspect of fluctuating cognition where a PwLBD will act with clarity with someone other than the caregiver then revert back to his normal confused state when that person is gone.
  • She still believes she should be able to reason with Leon.
  • She doesn't understand that Leon will remember the things in his reality, especially the negatives like her “infidelity”, easier than he can those in her reality—the nice things she does for him.
  • She doesn't understand that her agitation just makes things worse because he will mirror the intensity of her response.

Claire made a great first step towards understanding Leon’s disorder—she attended a support group. Often the members, who have experienced the same issues Claire has, can offer her more insight than the doctor can.

Their suggestion that she keep a journal is right on. She can use it:

  • As an on-the-spot record of Leon’s fluctuating behavior that she can show to the doctor or family members to support her own words. Videos and audio recording work well for this too.
  • to keep track of those behaviors like Leon’s delusions of infidelity so that she can discuss them at her support group. That way she can learn better ways of dealing with these than becoming hurt angry angry.
  •  to track Leon’s medications and their results. Because LBD is a progressive disorder, a person’s reactions to drugs will not necessarily continue to be the same. What once worked may now make symptoms worse, or may stop working at all or…
  • to vent in a safe way—and perhaps be able to keep her cool with Leon, thus lowering his stress level.
  • Can you think of other reasons for keeping a journal? I’m sure there are many!
Read more about the benefit of support groups in the 10/1/11 and more about fluctuating cognition in the 10/26/12 and 5/12/12 blogs. You can also read about LBD in general in A Caregiver's Guide to Lewy Body Dementia by Helen and James Whitworth. You can buy this book and many other LBD related books from our online store at