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

Friday, December 27, 2013

Merry Chirstmas!

Merry Christmas to all our readers. We’ve been traveling and so we are taking this week off and spending it with family. Next week will be about the New Year and all things new. And the week after that, we start a long series of blogs about stress and stress management. “Stay tuned!” And do enjoy the holidays.

We also want to take this time to thank our readers and wish you all a lovely holiday season. Take time to enjoy family and some of the small things that often get missed in the chaos of caregiving.

Jim and Helen Whitworth

Friday, December 20, 2013

Like a Child--but Not

Yes, dementia makes our loved ones similar to a child in so many ways. But there are several big differences.

Learning. Children can learn. Your loved one has lost much of that capability. Parents use various forms of discipline to teach children how to act. A child learns that if they do x, then y happens. Your loved one has lost the ability to understand cause and effect. Punishment simply feels like an attack. Praise feels good but your loved one probably can’t connect it with future behavior. For your loved one, prevention, bribes and distraction work better. Of course, there’s no learning going on and so you have to deal with each incident individually.

Using examples. Children often learn quickly by watching others and copying. Your loved one may be able to learn this way too—if you model the activity for them enough times. It takes an normal adult about six repetitions to learn something like a phone number. It takes a person with LBD many, many more repetitions, but it can sometimes be done. This is one big difference between LBD and other dementias. A person with Alzheimer’s loses the ability to learn at all. A vestige of that ability remains with LBD, but it is very limited. For example, eating can often become an issue. Reteach your loved one to eat by sitting across from him and with a smile, and slowing taking bite after bite. The smile is very important. Don’t talk—that’s distracting. Expect this to take far more than one meal to be effective. (See the 11/22/13 blog)

Perceptions of danger. People with dementia have often lost the ability to have a clear perception of danger. These skills are gone along with the ability to learn. What your loved one cannot do, he simply can’t do. Not now and probably not later either. Don’t expect it of him or castigate him because of his failures.

Instead, set up precautions: locks that he can’t unlock; alarms that tell you he has entered an unsafe area. Black paint or carpets in front of doors may appear as a chasm and be as good as a lock—unless this is a place where you want him to pass through at times, like the front door. Use baby monitors and surveillance cameras when you can’t be in the room with him.

When precautions don’t work—and they won’t all the time, use bribes to distract. Bribes are not a healthy way to deal with children. They teach manipulation. With your loved one, they don’t teach anything—they simply distract. The offer of a favorite treat works much better to get your loved one out of the street than yelling will.

Social rules. The ability to understand and follow social rules and niceties goes the way of being able to understand danger. Lower your expectations. Shrug, smile and move on. Others will follow your example. Apologize if necessary. Judy Scarff, in her book, The Journey Ahead: A Practical Guide for In-Home Caregivers, suggests a "Yikes" card to hand out to people who may not otherwise understand. This is a business-sized card that says something like, "Please excuse my loved one. He has a brain-damaging illness."

Size. Your loved one may be bigger and stronger than you are. Unlike a parent with a small child, you can’t use your size to intimidate or your strength to protect. You can’t just pick him up and carry him out of danger. If he becomes frightened or feels attacked, adrenalin kicks in and adds to his strength. You have to use your ingenuity to entice him away from danger or damage. Remember that he will mirror the intensity of your feelings and so try to stay calm. If you act angry or frightened, his behavior—and strength—will escalate. Bribes work well. Smile, offer an alternative activity and be patient. Your serenity will help him to calm down.

Adult concept. Your loved one has been an adult for many years. He may be acting like a child, but he doesn’t feel like one. You may have to set similar limits and safeguards that you’d set for a child, but if you treat him like a child, his behavior will likely increase due to frustration. Treat him with dignity and respect and you both will feel better.

For more, read A Caregiver's Guide to Lewy Body Dementia, available on

Friday, December 13, 2013

Lewy's Visual Problems

When Annie went from the kitchen with a tile floor to living room’s carpeted floor, she’d step and stumble. To her, the change of texture looked like a change in height. Janice kept spilling her coffee. She’d reach for it and her hand would miss it by inches—or hit it and instead of clasping it. Charles blinked a lot. His daughter thought he might have sore eyes. Laura complained of often seeing two of everything, especially when she was tired. Worse, sometime her vision was cloudy and blurred. Her husband suspected cataracts. Harold saw a pillow on the sofa and thought it was the cat. Gary kept seeing a little black dog when he knew nothing was there. He and his wife thought maybe there was a blood clot in his eye. All of these people had LBD-related visual perception problems. In each case, they went to the optometrist and get a clean bill of health for their eyes. It wasn’t their eyes causing the problem. It was their brain’s perceptual abilities that were at fault.

The occipital lobe at the back of the brain is particularly important for processing visual information, that is, for making sense of what we see. Lewy bodies often migrate to that area of the brain and when they do, visual perceptions can be affected. The following problems can all occur long before any cognitive issues become serious:

  • depth perception (Annie’s step up),
  • hand-eye coordination (Janice’s spilled coffee),
  • light sensitivity (Charles blinking) and
  • double vision (Laura’s “cataracts”)
  • blurred vision (also Laura’s cataracts")
  • illusions (Harold’s pillow-cat)
  • hallucinations (Gary’s little black dog)

When failing cognitive abilities become involved, the problems can become more difficult. Ray kept using other receptacles for the toilet—a flower pot, the laundry basket, even the corner of the closet and was confused when his wife got angry at him. Marge saw socks on the sofa, thought they were snakes and started screaming. Lenard also saw a little black dog, but he believed it was real and had to be fed and even walked.

In Ray’s case he was seeing these receptacles as toilets. This didn’t seem odd to him because his ability to make judgments had already been affected. He didn’t think, “What an odd place for a toilet.” He just used it. Marge’s problem was similar. She identified the socks as “snakes” and became hysterical. Her failing cognitive abilities did not allow her to stop and think, “Wait a minute. What else might they be?” Lenard’s cognitive abilities were also failing. Unlike Gary, he was unable to tell that the dog he saw wasn’t real.

If there is little cognitive involvement, the optometrist may be the first doctor to see a person with early LBD. However, few are trained to be alert for such problems or to connect them with LBD when they do recognize them. Do your part and share this blog along with a copy of the LBDA brochure with your optometrist. You can download the brochure for free from but it does require legal size paper. You can also use the following link to order ten or more brochures by filling out a contact form.

For more information about Lewy body dementia, read our book, A Caregiver’s Guide to Lewy Body Dementia, available in the LBD Book Corner on our website,, along with many other LBD-related books.

Saturday, December 7, 2013

Visiting a Loved One with LBD

Usually these blogs are for the caregivers. This one is for family or friends who want to visit a loved one who is living in a care facility.

If you don’t prepare for your visit, it can be frustrating and even heartbreaking. Your loved one may not recognize you and they may talk very little. It would be easy to think that a visit is not very helpful. However, visitors do make a difference.

As the disorder progresses, the goal of the visit must also change. You may no longer be able to connect with your loved one as someone that they remember. However, you can still connect with them as someone who cares.

  • Come prepared with supplies that might help with the interaction:
  • A family photo album is usually a hit. The past always easier to remember!
  • Gifts that provide comfort via the senses will be appreciated long after other gifts loose their attraction. Examples might be some flowers from your garden, a DVD with soft music, a favorite perfume or aftershave, unusual textures such as a soft afghan or a smooth, cool stone. Bring a scented sachet but avoid candles. The open flame could be dangerous.
  • Bring a favorite food or drink not usually available in an assisted living setting. My mom loved oyster stew. I'd get a to-go cup from a restaurant that we used to go and bring it to her. Someone else might crave Fritos or chocolate covered cherries.

Plan your visit for a time when your loved one is most likely to be clean and comfortable. Check with the facility or caregiver to find out what time is best.

Pain can appear as negative behavior—aggression or withdrawal, for instance. It will also increase LBD symptoms such as hallucinations and delusions. If you notice such changes, ask the caregiver or staff about pain management. Be aware that for the person with LBD, pain management is often difficult because the drugs that fix the pain may make the LBD symptoms worse.

  • Often the best gift you can give are things you can do with your loved one:
  • Hold their hands, put your arm around them or give them a back rub. A person doesn’t have to recognize you to appreciate these caring and nurturing activities.
  • Offer to brush their hair or apply lotion to their skin while you visit. These have a soothing affect.
  • Try wrapping their hands or feet in a hot, wet towel for a very soothing and relaxing “spa treatment.”
  • Open a window to feel a breeze, or better yet, take your loved one for a walk outside. This is especially welcome if they don’t get out much. I used to push my mother in her wheelchair around the block. It was a wonderful change of scenery for her.

Be careful of the way you talk. Talking down will increase agitation. Just chat away. Don’t worry about if they know who or what you are talking about. But do remember to talk slowly. Processing times for your loved one are very slow. Allow pauses between sentences. This may seem awkward for you but it will flow much better for your loved one. You will notice that after talking this way for a while that you become more relaxed as well.

For more information read A Caregiver’s Guide to Lewy Body Dementia, available at Order it through our website, and help us spread the word about this disorder.