Improving Communication

LBD can play havoc with verbal communication and yet the ability to communicate is important for our well being  with our without dementia.

• Language difficulties include the inability to find the right word or using the wrong word, often without even being aware of the substitution.
  
• Weakened facial muscles can cause a low, soft voice, even when the speaker believes he is almost shouting.
• Poor thinking skills. Slower thinking can take as long as 30 seconds to process a question and come up with an answer. Although this may seem like forever to you, your loved one is very busy processing and it does not seem long to them. Inaccurate interpretations are common and negatives may be missed, with directives such as “Don’t sit” seeming the same as “Sit.”
• Other issues may impede good communication: Poor hearing or vision, and depression or apathy decrease anyone’s ability to communicate well. Pain, infections or other illnesses all increase LBD symptoms and decrease language abilities.

Negative feelings, like frustration, confusion, low self-esteem, discouragement or inadequacy, are generated by poor communication. This adds stress, which increases LBD symptoms and makes communication even poorer, with social isolation a very real risk. Here are some ways you can improve communication and help your loved one stay socially connected, healthier and happier:

• Believe. If you believe that your loved one can still communicate, you will likely be successful—if you don’t, you probably won’t be. In support of belief, researchers have long said that comprehension is among the last abilities to go.
• Make the goal about being together, not about understanding or being right. If your loved one calls you Mary and your name is Janice, don’t correct the mistake. It will probably only embarrass or confuse which adds stress—and still poorer functioning.
• Eliminate distractions. Your loved one can focus on only one thing at a time. For a successful conversation, make sure their focus is on you.
• Listen carefully. Sit or stand closely and pay attention so that you can hear their soft voice. Make sure nothing is distracting you either.
• Be alert for non-verbal cues, often much more accurate than words. Check to see if you’ve guessed right: “Do you mean….?”  You can use visual cues too—pointing, touching, smiling, etc. can help your loved one to understand you better.
• Take your time. It takes at least 30 seconds for a person with dementia to process a response. That can seem very long but if you are patient, you may be surprised at what your loved one is able to give back to you.
• Talk normally, but slowly and distinctly. Don’t shout; dementia doesn’t cause deafness. (Shouting also makes you more difficult to understand.) Do talk slowly; remember the processing time issue. Also, talk clearly. Most of us are able to make educated guesses about words that are unclear. Your loved one may not be able to do that. Use positive directives: “Stand” not “Don’t sit.”  These are easier for your loved one to follow.
• Don’t interrupt. Let your loved one complete their response. Interrupting confuses. This includes finishing their sentences or trying to provide the right word. Only do this if asked, or if they have obviously come to a stopping point.
• Limit choices and ideas: Yes or no? This one or that one? Give only one instruction at a time and don’t change subjects.  To many choices or ideas at once overloads their processing ability, resulting in negative feelings, stress and increased symptoms.
• Use humor. This is relaxing and defuses negative feelings—for both of you. Laugh at your mistakes and help your loved one laugh at theirs.
• Check for other issues. How is your loved one’s hearing? Vision? Are they depressed? Apathetic? Are they ill in some other way? Maybe some of the problem isn’t dementia?
• Use touch and affection. When all else fails, this remains. Even when your loved one doesn’t know who you are, a loving touch, a gentle tone of voice and a caring smile are still communication they can understand.

Gifts We've Received

This is the time of the year when we think of giving and receiving. We’ve given in many ways. To the LBD community, we’ve given our time, money and talent, as we have for many years. And as always, we receive much more than we give.

We continue to receive many gifts of recognition and appreciation, mainly because of our book, A Caregiver’s Guide to Lewy Body Dementia:

Perhaps the most convoluted gift was hearing a friend tell us about a friend who was amazed that she knew the authors of a book another friend had raved about. (Yes, the word does get around!)

Among the most exciting were these: seeing our book referenced in a recent, very good, book about LBD experiences, hearing a world recognized LBD expert say, “I recommend it to all my patient’s families,” being invited to speak at a Parkinson’s Telehealth conference that reached out to people in five states and of course, the Caregiver Friendly Award that we talked about in an earlier blog.

But the most rewarding to us are many rave reviews of our book on Amazon, the many times we’ve found our book recommended by caregivers on LBD forums and in LBD support groups—and the times people have come up to us and told us how much they appreciated the book. You are the people we wrote this book for. It’s your appreciation that moves us most and inspires us to do more. We love knowing we have helped so many people.

Another gift is the sense of direction this work has given us. We are retired, true, and that has given us the gift of being able to work at what we love and do it at our own pace. But we have a mission, goals, and plans for the future. This keeps us young. We met one of our goals in December when we completed an upgrade to our Lewy Body Dementia Training Kit for facilities and support groups. We improved and brought up-to-date the hour long family and two half-hour staff presentations. Then we added two more mini-programs for when time is short. You can learn more about this on our webpage, lbdtools.com.

Then there’s what we have learned—and continue to learn. Both of us love learning new things, discovering new ideas. And with LBD, something new is always happening—new research, new caregiver experiences, new priorities. And as we learn and change, our work reflects those changes. For instance, we are now focusing on the disorder's progress from PD into dementia, along with all those earlier symptoms. Look for a new book within a year.

A huge gift is the many new friends we’ve made in our work and our travels. Group leaders, past and present caregivers, facility staff, LBD patients, physicians and research specialists—we appreciate you all! One special treat was getting to join an gathering of past caregivers last summer. What stories we heard! What admirable people!

We can also add to our list of new friends, many writers that we’ve come to know through our work—talented people we learn from and admire. People who add perspective and ideas to what we can give back to our readers. We especially appreciate the chance we’ve had to read some books by caregivers that have yet to be published. They were good—we hope that eventually you will get to read them too.

And finally, doing this blog has been a wonderful gift for us. It has kept us involved when it would have been easy to dash off to other projects and forget to return. It has pushed us to stay tuned to caregiver concerns, and to learn more, and always more.

Amazon has books--finally!

Just a quick bulletin to let you know that Amazon finally has our book (A Caregivers Guide to Lewy Body Dementia) in stock--in time for you to buy it as a Christmas present--if you order right away. It has been out of stock for weeks. Not sure why, but it's back now. Please support our work with LBD by going to our website to order it. It doesn't cost you any more and we make a small commission from Amazon. Simply click on the link below. It will take you to the LBD Book Corner. While you are in there, do check out all the books that are now available about LBD and its care. So many! when only a few years ago there were so few!

Click here to go to the LBD Book Corner

When Families Don't Understand

No one wants their loved one to have dementia, let alone LBD. And it is still not uncommon for our family members to be unaware of its symptoms. Or, when told, to be sure they don’t pertain to THEIR loved one. The holiday season is often when distant relatives come to visit. This can be joyous—or sadly, not. Especially when the relatives doubt your word that Mom or Dad has a degenerative disorder. Betty, a surviving spouse tells her story of what happened with her daughter and son-in-law:

Darla and Joshua came to spend a week with us. I’d told them about my concerns, but they didn’t want to hear it. They made excuses for Hal’s behavior—They thought the doctor had it wrong. They thought I was over-reacting.

“Not dad,” Darla said. “He’s just a little slow—it’s just the PD.”
“Maybe he thought he was being attacked and that's why he hit out,” Joshua said after a he saw his father-in-law bat at the dog for no apparent reason.

It was frustrating but I understood. It had taken us a while too. When the doctor told us that Hal was starting to have dementia symptoms, we were shocked. We attended the PD support group in our city but no one ever mentioned dementia.

I explained it all to the kids but they weren’t convinced until the day Darla and I went shopping and left Hal with Johsua. When we returned, Josh met us at the door, almost hysterical. “You know what Dad did?” he hissed. “I left him for just a minute—just a minute, mind you!—to go to the bathroom. I told him I would be right back. Actually, I didn’t think he could get out of his easy chair without help but I made him promise he wouldn’t anyway. I had barely made it to the bathroom when I heard a thump and there was Dad down on the floor in the hall.”

“Welcome to my world,” I told Joshua. After that they began to listen to me—and believe me. I can’t tell you what a relief that was. It was as if I didn’t have to bear this burden alone.

Betty was fortunate. Grant and his wife weren’t so lucky. His stepchildren also refused to believe their mom could have dementia. “You are over-medicating her,” they insisted and went to court, got custody of her, took her off all of his medications and put her in a nursing home—where the staff kept her calm with psychiatric drugs. Months later, with the help of his brother, an attorney, Grant got his wife back but she was never the same—her level of functioning had plummeted.

Two very different stories but in both cases, the people who had less contact with Lewy didn’t believe it was there. The way they react depends on family dynamics, with blended families often being less supportive. This is too bad because it is their loved one that suffers, their loved one that becomes worse because of the stress that family strife, change and inappropriate medication inflicts. What can you do to keep this from happening in your family?

• Have a Durable Power of Attorney and a Medical Power of Attorney. Many couples prepare these for each other while both are still well, so that if one of them becomes unable to care for themselves, the other can step right up.  In fact, as early in the progress of the disorder as possible, it is a good idea to visit an Elder Care Attorney, one who specializes in what legal steps need to be taken for someone with a progressive disorder like LBD.

• Keep a journal or start a blog. Some physicians encourage you to send them a daily or weekly email. This is great documentation, supported by the doctor involved. Even if that isn't an option, you can still take it with you to your visits. A part of each visit should be with you alone so that you can discuss what’s in your journal and get important entries into the doctor’s notes. Keep family members informed by emailing them portions of your daily journal entry. (You will want to use your journal for venting too, and you might not want to share that!) Seeing what goes on day by day, can be an eye opener. Or start a blog. It provides an ongoing record of your Lewy journey that your family can visit at any time. Some caregivers have used audio recordings or videos. With the phone cameras we have today, this can be fairly easy to do, and can be quite effective.

• Keep close track of  medications. "Over- or under-medication” is a common charge. PD drugs can cause or increase dementia symptoms and so you need to show that you are working with the physician to keep the drugs balanced. Record everything including the date you fill a prescription and how many pills are in the bottle. Then record the times and dosage each time your loved one is medicated. Adding any unusual results will make this valuable for the doctor as well.

• Develop loving, trusting relationships with family members. Of course, this starts very early and depending on the situation may or may not be possible but it is always worth striving for. Since money is often involved, teaching your children to value family and relationships over more material things will help to build trust--which every caregiver needs.

ADHD and Lewy Body Dementia

Both attention deficit, or inattention, and impulsive behaviors are common early LBD symptoms although until other symptoms show up, LBD is seldom suspected. Nevertheless, these symptoms may be stronger risk factors for LBD than previously thought.

Inattention and impulsivity are also symptoms of attention-deficit/hyperactivity disorder (ADHD), which starts in childhood, usually between age three to five, and can continue into adulthood. Unlike Lewy, it is often genetic, being passed on from parent to child. However, there are many similarities between ADHD and LBD. Like Lewy, it occurs most often in males. Inattention causes a child to have difficulty completing a task, following instructions, staying organized and processing information, similar to the way the same problem affects adults with LBD later in life.

Impulsivity leads to behavioral issues and a lack of emotional restraint. Again, this is similar to the behavioral and emotional issues of LBD. Tests of people with Parkinson’s also show higher than average levels of inattention. Researchers suggest that the reason for these similarities is that people with Lewy body disorders and ADHD all have low amounts of certain chemicals (neurotransmitters) that brain cells require for proper functioning, although the chemicals vary with the disorder.

Even more interesting, a recent study found that those with adult ADHD (AADHD), people whose attention deficit and hyperactivity continues past childhood, were three times more likely to develop LBD than someone without the disorder. Further, people with adult AADHD were no more likely than the general public to develop Alzheimer’s. If substantiated with further studies, this could make AADHD as strong and as specific an indicator of eventual LBD as Active Dreams. (November 2, Active Dreams, PD and LBD) Thus, we suggest that anyone with AADHD start planning ways to avoid or delay its advancement into dementia. If it turns out that the risk of LBD isn’t so great, what you’ve done won’t be wasted. After all, most of what you do to delay dementia makes you healthier anyway.

Association of Parkinson's disease with symptoms of attention deficit hyperactivity disorder in childhood.

Adult ADHD Linked to Increased Risk for Lewy Body Dementia.