Using Behavior Management to Deal with Acting-Out

 In our March 2^nd blog, we talked about how LBD damages a person’s ability to control their behavior and how action follows closely behind feeling. Therefore, it is actually the caregiver’s behavior, and perhaps even more importantly, the caregiver's attitude, that must be managed/changed to decrease LBD related acting out. Here are some things you can do:

Take your time. Dementia slows everything down and it can be stressful to try to keep up.  Talk a little slower and give your loved one lots of time to answer. It might help to silently and slowly count to ten before expecting an answer. When helping your loved one bath or eat or anything else, don’t rush even if you are feeling time pressures. It really won’t take that much longer because your loved one will be more able to cooperate.

Practice feeling calm. As communication skills decrease, perceptions increase. Lewy folks pick up on tensions easily. However, their interpretation skills are flawed. They may identify hidden anger at a situation, for instance, as a rejection of them—and act out. And so, work on feeling (not just acting) relaxed when you are around your loved one. It helps them to stay calmer too.

 Have reasonable expectations. Don’t expect more than your loved one can give. As Lewy takes away their abilities, it becomes hurtful to challenge them to “do better,” or “try harder” or to remind they how easy a task “used to be.” And when Lewy folks feel hurt, or when they feel they've let you down,  they act out.....

 “It’s the disease talking, not my loved one. It’s Lewy, not…..” Make this your mantra. It will help you to ignore Lewy’s hurtful behavior and you will find it easier to maintain a loving, caring attitude.

And finally, use touch and an affectionate tone of voice. These elicit positive feelings and decreases acting out. Dementia does not take away the enjoyment of loving behaviors. A hug, a gentle pat, a soft, loving tone all decrease stress and thus, acting out.

Do you have any suggestions that have worked for you?

Dealing with Hallucinations and Delusions

 “I feel so helpless,” the LBD support group member said. “He has these terrible delusions and won’t let go of them. He makes me part of them, saying I’m bad, playing around on him. Naturally it does no good to tell him he’s wrong. I tried entering his reality, but that made him even madder.  What do I do?” 

People with dementia have lost their “thinking filter.” They go directly from feeling to action. As your loved one feels more and more helpless, fear of rejection becomes common. This is often expressed with the type of delusions the speaker described.  The fear becomes the delusion, and your distress only feeds it, increasing their stress, which in turn, increases behavior. Here are some suggestions that have worked for other caregivers:

First, some Don’ts:

•       Don’t try to reason. You can’t reason with someone whose thinking ability is impaired. This increase stress—yours, and in turn, his.
•            Don’t say they are wrong—that what they feel or see isn’t real. (How would feel to be told that what you believe with your whole being is not true?)
•       Don’t get angry, sarcastic or impatient.  This will only make the situation worse.

Now the Do’s:

•  If it is not causing your loved one distress, ignore it. (Hallucinations and delusions often cause more concern to the caregiver than they do to the loved one. Learn to live with the benign acting out.)
• LBD folks usually start out knowing their hallucinations or illusions aren’t real, even though they may be quite vivid. Therefore, early on, you may be able to verify that, for instance, the flashes of light aren’t a raging fire. But don’t push it. If your loved one is beyond reason, your “reassurance” will feel like an attack on their perceptions—and on them.
• If you possibly can, enter your loved one’s reality enough to distract or redirect the behavior.
• Try to distract with reminiscences about happier times in the past, when both of you felt good about each other. People with dementia have a short interest span and they operate on feelings. If you can get him to focus on reliving the positive, loving feelings, the negative feelings feeding the delusion may decrease.
•  Remember to de-stress the environment. (See last blog.)
• While LBD folks have more acting-out behaviors than people with other dementias, their sensitivity to acting-out drugs is so great that managing behavior via drugs may cause more problems than it solves. More about this in future blogs. 

The Importance of Environment

It’s been a while since we posted anything. Sorry—busy with other stuff—holidays, family, etc.  After all we ARE retired! But we are back. Dealing with acting-out seems to be a major topic of concern, and rightfully so. Since behavior management drugs can be so dangerous for our LBD folks, our focus is in identifying ways to do this with fewer or no drugs.

Acting out is the behavior your loved one uses to communicate feelings of anxiety, stress, fear or pain. If you can identify the trigger of the feeling, you are on your way to decreasing the behavior. For instance, if it is a certain time of day, what is he usually doing then? Can you make that less stressful?

LBD limits your loved one’s ability to do executive tasks like think, learn or make decisions. Thus, anything that requires an attempt to do these tasks will increase anxiety. (Just think about what it's like when you try to do something you can't figure out how to do, especially if it is something you think you should be able to.)  In addition, LBDers are supersensitive to intense physical stimuli such as light, noise, heat, cold, etc. Their bodies just don’t adapt well anymore.  Here are some things you can manage in your environment: 

Clutter: A room filled with clutter gives your loved one too many choices of where to direct their attention.  Put away all but a few items.

Light:  Besides the general sensitivity to strong stimuli, LBD folks are especially sensitive to light. Make sure your rooms are lighted in a soft, non-glaring light. Avoid sun-glare. Keep your LBDer shaded when you go outside.

Noise: Make sure TVs and other types of noise stay at tolerable levels.  Use softer tones yourself and teach others to do so around your loved one.

Media: LBD takes away the ability to separate reality from make-believe. For example, if the police are chasing the bad guy, you loved one may join in the chase—or feel chased. Monitor all media and replace exciting, scary shows with something more calming.

Choices:  Offer no more than two. Yes or no, here or there, the chair or the sofa, etc.

People: Try to avoid crowds; they bring too much stimuli and require too many choices. For instance, the murmur of several different people talking at the same time at a party or even a small family gathering can feel overpowering.

Replacement items:  New items are no longer fun—they require learning. Try to duplicate a worn out sweater instead of buying one of a different color or style. Buy the same kind of underwear. 

Watch for future entries where we'll talk about more ways to decrease acting out.

LBD Awareness Month

From its start, raising awareness has been a part of the Lewy Body Dementia Association’s mission. For example, its brochure contains such comprehensive information that I call it the Cliff Notes for LBD. The LBDA has designated October as LBD Awareness Month, and has invited volunteers to help spread the word. People across the country have been quite creative: races, sales, cultural events, and more. Each event increases awareness, which in turn makes it more likely that LBDers and their families will receive the treatment and understanding they need—and deserve.

Promoting LBD awareness has been Jim’s mission for years. It’s the reason he co-founded the LBDA, the reason we wrote our book, A Caregiver’s Guide to Lewy Body Dementia and the reason we are now offering our LBD Trainer’s Kit to care facilities. Like all LBD survivors, Jim has his story: His first wife, Anique, was diagnosed with Alzheimers in 1999. Jim, a computer engineer, naturally went to the internet for information where he found that her symptoms matched LBD better than they did Alzheimers. But when Jim told this to Anique’s doctor, the man said, “I’ve never heard of that,” and continued to treat her for Alzheimers. (Go to LBDtools.com for more about his story and mine.)

Looking back, it was no surprise that Anique’s doctor had never heard of LBD. After all, it had only been identified as a specific disease in 1996. But fast forward to 2011: This summer, a residential care facility administrator told us, “Our staff doesn’t need your training because it [dementia care] is all about the same.” And when we mention Lewy body dementia to the general public, we still get more blank looks than we do recognition. I read somewhere that it takes about 20 years for a “new” disease to become known. In that case, LBD still has five years to go—until 2016.

Even though it is already October, it’s not too late to accept the LBDA’s invitation to increase LBD Awareness. The need continues throughout the year. And so visit the LBDA on Facebook for ideas about how you can be a part of their LBD Awareness campaign. Some are as easy as sharing a press release provided by the LBDA with your local newspaper. If you want to organize a community outreach event, go to www.lbda.org/go/awareness and download campaign materials. Let’s not wait until 2016---or later! Let’s make LBD better known NOW!

Support Groups

We had the honor of being invited to attend an LBD Support Group recently. It reaffirmed our belief in their value. They remind caregivers that they aren’t alone. Others are having the same or similar issues. When one member talked, we saw others nodding their heads. Yes, they’d been there. They knew. And sometimes, they had an answer. Something that has worked for them and might work for the speaker.

Like most support groups, there were people there in different stages of caregiving. A woman considering residential care with great guilt but equally great exhaustion. Another who had been through the same experience not long ago and was now beginning to see how she, with some restorative “me time” in the evenings, was able to be a better caregiver for her loved one. One woman who asked a question that received several answers but none she hadn’t tried: “I feel better knowing I’ve done all I can.”

A lone man in the group asked, “Do women ever get LBD?” And the unspoken question, once that was answered positively, was “and why aren’t the male caregivers here—the husbands and sons?” Sadly, we seldom see many men in support groups—even the online ones. They miss a lot.

BTW, we've changed our options so that people can comment and we'd love to hear from readers....

Delusional Misidentification

Delusional mis-identification is a common symptom for our LBD loved ones. According to Carrah L. Martin, 2009, these delusions, each with its own name, can be about times, places, objects, person, including self, and even body parts. Jo’s mother believed that Jo was an imposter who had replaced her real daughter (Capgras Syndrome). Marie shared that her husband insisted that his home was the imposter (reduplicative para-amnesia). As caregivers, knowing a type of delusion's particular name is less important than knowing how to deal with it.

Judy said she didn’t feel she could go along with her spouse’s delusions. “Years ago, I promised him I’d never tell him a lie.” In the LBDA’s July Lewy Body Digest, an excerpt from A Caregiver’s Guide to Lewy Body Dementia talks about making and keeping promises to our LBD loved ones. The bottom line is “Never make a promise you can’t keep.” Of course, after the fact, you may discover that what you thought was an easily kept promise is now harmful to your loved one.

When LBD takes away our loved one’s ability to reason, the rules change. Imagine how you would feel if the most important person in your life refused to accept what you know with every part of your being is true. You’d be hurt, right? And when someone with LBD hurts, they tend to act out, which at best, is uncomfortable for both you and your loved one, and may at times be quite unsafe. If you can show your loved ones that you are working WITH them to find a solution to their very real and quite distressing problem, they will feel supported and there will be fewer acting out behaviors.

Judy is not lying when she accepts her husband’s delusion enough to move him in a more comfortable direction. She is joining his reality. You don’t have to agree directly. Jo can tell her mother, “All right, Mrs. K., I’m leaving. Jo will be back soon.” And Marie might say, “You might as well take a nap while we're here. I’ll stay awake and make sure you're safe.” Or even, “While you're resting, I’ll get us back home.” No specific strategy is guaranteed to work, but generating the feeling that “we are in this together” will go a long ways towards calming your loved one.

Adding up the Statistics: 60% of All Dementia Patients Have Lewy Body Dementia!

We still hear Lewy body dementia refered to as a "rare dementia."  However, in his recent article, Confronting 100 Years of Confusion about Lewy Body Dementia, Dr. James Leverenz, University of Washington, Seattle, states, “… up to half of Alzheimer’s disease patients have the “Lewy body variant” [Lewy bodies in the brain upon autopsy] … and most Parkinson’s disease patients develop dementia….” Here are some statistics:

• 60-80% (let’s say 70%) of all dementia patients have Alzheimer’s. (Alz. Assn.)
• 20% of all dementia patients are diagnosed with a Lewy Body Dementia. (LBDA.org)
• Many  Parkinson’s patients develop dementia but never see a dementia specialist and are not included in the LBD statistics.

For the percentage of all dementia patients with LBD, we can add: 

• the approximately 35% of dementia patients with both AD and LBD, per Dr. Leverenz,
• the 20% of those diagnosed with LBD,
• and a very conservative 5% for the unidentified number of Parkinson’s patients with undiagnosed LBD.

That's a conservative 60%. We can safely say that LBD is no longer rare.