Don't Take It Personally!

Most LBD caregivers have heard this: “It’s not my loved one acting out. It’s the disease.” Mary Givens often responds to that with a “Yes, but.” “Yes, but it is so difficult to separate the person who still looks and often acts like Ed from his disease.” “Yes, but it still hurts.” “Yes, but I forget.” And so on. Being able to separate yourself from a person’s action is a learned behavior—an adult behavior. It takes insight, and the ability to make a conscious choice to look at the situation a different way.

Mary is a grandmother as well. For her two year old grandson, Jerome, everything is about him and he acts on his feelings without thinking. This is normal and he will grow out of it. Not as quickly as you may think, however. Mary’s son just went through a divorce and his 15 year old daughter, Megan, is devastated. She believes she caused the divorce because her dad couldn’t deal with her teenage behaviors. Even though her parents have insisted that this isn’t so, that it was their inability to get along, Megan still feels to blame.

In fact, do we ever grow out of our self-centeredness completely? Well, yes, most people do, but we often regress, especially when stressed. Stress limits our resources and we tend to regress back to earlier coping behaviors—to acting on feelings impulsively with little or no evaluation as to their validity and to seeing things from a lens that excludes other people's feelings and concerns. The person who “never” cries, cries. The usually careful dieter pigs out on junk food. The caregiver who can usually recognize that her loved one’s behavior isn’t about her takes the behavior personally.

With LBD, the person begins to regress back to that place where everything is again taken personally. like Mary’s grandson, everything is about "me."

Mary is like most people. Her initial response to Ed’s negative behaviors, even when she knows it isn’t really about her, is to take it personally. For a moment, she is shocked, angered, scared, insulted, etc. However, she has found that when she acts on that initial feeling, she is in a no-win situation, squabbling with Ed like a couple of toddlers. No one gets their needs met. Certainly not Mary, who probably ends up crying. And not Ed, whose behavior was likely a stress-related communication about something he needs.

Ed can’t change. He will likely continue to express his needs with shouting and other acting out behaviors. And Mary will continue to respond initially by taking it personally. But Mary doesn’t have to stay there. She can still think and make judgments and choices and act on them. And so Mary makes a conscious choice to view the behavior as a symptom of Ed’s disease. Immediately, this reduces her stress level. It is no longer a personal assault. It is now a cry for help. Now, in caregiver mode, Mary starts looking for the cause of Ed’s irritability. She knows that if she finds it and responds to that, Ed will probably calm down.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Negotiating a Truce

Blogger Eric Barker (Barking Up the Wrong Tree) says we all need to know how to persuade people. He asked the NYPD hostage negotiators about how they do it. As I read his blog, I found a lot of similarities between a hostage situation and dealing with a PwLBD who is acting out. In both cases, emotions, not rational thinking, rule. We are also fans of Teepa Snow with her "Positive Approach" and of our own local dementia expert, Geri Hall, who has been working with dementia caregivers for well over 40 years. Here are the four NYPD "secrets" from Eric adapted to address caregiver situations with some similar statements from our own gurus.

1. Know their hooks and buttons. Hooks are things your loved one likes. Caregivers often have a head start here because you usually have a good idea of these already. But to find out what is important at this moment,

• Listen without judging. Take the time to understand not just the words, but the emotions behind the words. Listening means you are validating the person, not necessarily the story. Teepa also suggests you get on their level, and use eye contact.
• Show interest. The NYPD suggests that when a hostage holder makes "crazy talk", the negotiator say something like this: "Oh, that's really fascinating. I never heard it in quite that way before. Help me to understand. How did you come up with that?" Teepa Snow suggests that you ask person who is hallucinating to "tell me more" and ask specific questions about color, etc. Both examples show you are involved with the conversation.
• Suspend your ego. Put your own needs, wants, and opinions aside. Don't interrupt or try to correct, which will be perceived as judgmental. No-one likes to be judged, thus it will escalate the situation. This doesn't mean that you have to agree. It only means that you don't express your disagreement. Geri reminds us that they can't hear your concerns right now anyway. They are much to focused on their own issues and their own view of them.

2. Focus on the future. The PwLBD will likely be talking about the past...events that were perceived as painful. Once your loved one feels you are listening, try to turn the conversation to the here and now, and to the immediate future. Geri puts it this way: "Agree, apologize, promise to fix." The "agree" gets you on their side. The "apologize" maintains their dignity. Do it even if you aren't in the wrong! Just do it. Then the "promise to fix" puts you both into the future. Be careful not to make promises you can't deliver. Promise to "work at fixing" or "checking it out" rather than delivering the whole thing. Teepa suggests that you ask for their help in fixing the problem. Ask what do they think can be done.

3. Model the behavior you want. In this case, be calm and soothing. However, Teepa Snow suggests that first, you agree with the PwLBD, matching their level of anger and voicing what they might not have been able to say. THEN, take some deep breaths and get them to take deep breaths with you. And THEN, go into the calm, soothing routine. Trying to calm someone who doesn't feel you are "there" for them is often futile. When they feel you are "on their side" they don't have to be so angry and can allow themselves to take those deep calming breaths and relax.

4. Slow it down. Each step of this process should take a lot of time. You would probably like to just get it over with! But moving too fast leads to pressure and intensifies emotional decision making vs. rational decision making. This is true for anyone under stress. Add the difficulty that a PwLBD has with thinking in general and this is greatly increased.

• As the PwLBD begins to calm down, slow your own responses even more. Make sure you are both on the same page. A small spark could start the acting-out all over again!
• Be very clear about what is going to happen next. Make sure the PwLBD is happy with this and doesn't feel pressured. "OK, let's go to dinner and then I'll talk to the nurse about your purse. Are you all right with that?"

View some of Teepa Snows wonderful videos: http://teepasnow.com/resources/teepa-tips-videos/

Read Eric Barkers fascinating blog: http://www.bakadesuyo.com/2015/11/hostage-negotiators/

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Waiting for the Big One

A (nameless, please) caregiver posted this recently and gave me permission to use it in our blog. Since the holidays often bring out the worst in Lewy, this might be a good time for all of you out there in Lewy Land to remember that you aren't alone:

I've been of late thinking this dreadful feeling I always have is familiar. Is it from childhood? Some event I've forgotten? A repressed memory? I was in all the big and small earthquakes in Los Angeles and actually worked in disaster response for several years. It hit me a while ago. That's the feeling. Living with Lewy, at least this last year, is like waiting for an earthquake.

When will it hit? Stop? What kind of damage will it do? I can't prepare. So everything has to be left to chance. Nothing planned. Something as simple as thinking I better do laundry tomorrow. But tomorrow comes and there's a 6.5 on the Lewy Scale in the form of a major emotional upheaval. 10 hours. All time and energy has to be focused on containing the situation. You know the drill. Laundry out of the question. Recycle the towels and wear the same PJs for a third night.

I invited people over for dinner this week. Don't I ever learn? Thinking I'll be able to clean AND cook is practically taunting Lewy. Sending him an engraved invitation. And right on time, here comes another one and it's a big one. The wolves are outside. He hates everybody including me. The dogs told him I tried to hurt them. Why is the moon out instead of the sun? Can you see thru me? Look at this. What's that? Where's my wife? If I try to put salt out this winter, that's it. He's out of here.

So instead of slicing and dicing, it's soothing and placating. Instead of hearing praises for my signature smothered short ribs and 5 cheese mac & cheese, its pitying looks when I put out the paper plates, pizza and a side salad. No dessert. No clean cups for coffee. Out of cream anyway. They already think I've let myself go. Gained 30 lbs., don't get my hair, nails done anymore. If I tried to explain life with Lewy they'd think I'M insane.

I say a prayer that this earthquake subsides and some part of the visit can be salvaged. That he doesn't start trying to menace and intimidate the people he always loved most and would protect with his life had Lewy not possessed him like some evil spirit. He doesn't. He stays quiet. They leave. He says, "That was fun. How come people don't come over like they used to?" Gotta love him. Gotta be thankful he's oblivious to most of it and forgets quickly. LBD should have a subtitle: "Waiting for the Big One."

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Learning Curves

We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.

A selfie with Jim, Dave and Helen

We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.

But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)

Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.

As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.

“What does she take the Serequel for?” we asked.

“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”

“Do they bother Bet?”

“No, they don’t seem to bother her much at all. It’s me they bother!”

“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”

Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!

For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.

Just Telling Isn't Enough

“Don’t rush into a room with little more than a greeting and start working with a dementia patient,” the CNA (Certified Nursing Assistant) trainer told Janie’s class. “They function at a slow pace. Too much speed and not enough information confuses them, which slows down their thought processes even more. This adds stress, which increases symptoms like delusions. So walk in the room and, with a pleasantly calm voice, let your patient know what you want to do. Ask their permission. Include them in the task. Otherwise, someone who is already delusional may feel attacked and that’s when you are likely to get hit.”

Janie remembered what her instructor said. She was late—as usual, but she walked into Ed’s room instead of rushing in the way she wanted to. She took the time to ask him if he would like to have a shower instead of just telling him it was time for a shower while getting him ready. “OK,” Ed responded with a smile. Janie smiled back, glad that her instructor’s advice was working. Ed was being more agreeable than he usually was.
Information given and permission received, Janie bent over to take Ed’s shirt off—and he slugged her in the jaw. To Janie, “have a shower” meant a whole string of events, from removing Ed’s clothing to toweling him dry. To Ed, whose LBD type of dementia made sequential thinking difficult if not impossible, “shower” had nothing to do with taking his clothes off. He perceived Janie’s bending down into his personal space as an attack.

For the overworked and rushed CNA, or for that matter, the stressed out family caregiver, taking time to explain every little thing can seem like a burden. But in the long run, it saves time, because their patients will be much more cooperative—and less combative. But as Janie learned, it’s not enough to simply explain the concept—the big picture. They need to explain each step as they go along. Let’s replay the above scene:

“Hi Ed, would you like to have a shower?” Janie says as she enters the room. With a smile on her face she waits for Ed to think a minute before he nods and says, “OK.”

After Ed answers (giving him time to process), Janie continues, “Well then, we need to get your shirt off.” (Telling him the first step of what she wants to do.) Janie waits until she is sure Ed understands what she said. (Letting him know about the shirt is a 'step.') Then she continues, “Which arm do you want to take out first?” (Including him in the task.)

Now that Ed knows why Janie is reaching for his shirt, he cooperates, holding out his left arm. As they go along, Janie tells Ed each step before she does it and includes him when she can. She never moves to the next step until she can see that Ed is with her—that his processing is “up-to-date.” Ed is less confused because he isn’t being rushed. He has a better idea of what Janie wants this time, and so instead of fighting her, he helps. Ed gets his shower and enjoys the experience. Janie is done in record time and moves on to her next patient with a feeling of success.

The first scenario is most likely to happen in a care facility where staff members are less familiar to their patients than family caregivers are and therefore can more likely be seen as attackers. However, if you are a family caregiver, you need to use these skills too. It may also fall upon you to be the “instructor” who explains these skills and the reasons for them to the well-intentioned, but not always Lewy-savvy Janies in your loved one’s care facility.

Happy Triggers

Most caregivers have learned to look for triggers that increase stress—and acting out. But do you also look for triggers that decrease stress? Like the acting-out triggers, these “happy triggers” can be very individual but there are many that work for most of our LBDers.

Music is one of the more general happy triggers. It works wonders with many people. Usually, soft elevator or easy-listening music is best, but consider individual tastes too. Or maybe it is just one tune that brings back feelings about happy times. Or a specific kind of music. Beth told of how her mother had collected music boxes. When she visited her mother, she’d play them. It not only calmed her mother, it pleased the other residents too!

Touch is another fairly general happy trigger, especially when used with a gentle tone of voice. Remember to move slowly and touch softly. Harold paced when he became agitated. His wife learned to go up to him and, putting her hand gently on his arm, talk to him softly. “It didn’t really matter what I said,” she told her group. Just the words and the touch made him less agitated. And then I could steer him over to his chair and he’d sit down.”

A third are family photos. Whenever Judy placed an album filled with family pictures in her father’s hands, he would calm down. He loved to look at the photos even though he couldn’t identify all of the faces anymore.

Tools of a past trade or hobby often work well as happy triggers. Lydia had been a librarian. Her “happy trigger was a book. Give her one and she’d smell it and hug it to her chest and smile. For Janice, the mother of five, it was a baby doll. Some feel that using dolls with dementia patients is demeaning and “infantizing.” Our own take on this is that if it the doll has a calming effect on your loved one, it is a shame not to use it.

The further along the LBD journey your loved one is, the more they rely on feelings rather than words and concepts. And so a happy trigger can be anything that generates positive feelings, feelings of adequacy and even accomplishment, of safety and security, of love and affection, of comfort and fun. Don’t forget humor. Not being able to express humor anymore does not mean that it isn’t appreciated. And so, to find your loved one’s individual “happy triggers” think about what has made them happy in the past. They are still the same person, after all.

Of course, you must take into consideration LBD’s sensitivities. Jerry once loved loud music—the faster and louder the better, but now hearing it makes him agitated. Myron once loved to go to a crowded mall and people watch. Now crowds overwhelm him. You also have to take into consideration their lost executive skills. Ella loved TV mystery shows. Now she can’t tell what’s real and what’s not and she becomes frightened because she believes she is in danger.

Parkinson’s families learn to adapt for their loved one’s mobility issues. Leon walked miles each day; now his wife pushes him around the block in his wheelchair when he gets agitated. In fact that’s the name of the game for all LBD families. What other kind of music might be a “happy trigger” for Jerry? Where can Myron indulge in people watching when he isn’t in a crowed mall? What other kinds of TV will entertain and calm Ella? It’s all a matter of trial and error.

But once you’ve found your loved one’s happy triggers, use them. Of course, you won’t need them as much if you’ve also found those things that trigger the acting-out and do your best to avoid them. Use the happy triggers when the acting-out occurs anyway and you’ll both be happier. In fact use the happy triggers often, with or without acting-out. Why not? We all like being happy!

Fluctuating Cognition: A Blessing and a Bane

One way that LBD differs from other dementias, is the occasional window of clarity, where our loved ones return from their journey into the confusion of LBD and appear to be very similar to their old selves…alert, verbal, charming, compassionate, humorous, knowledgeable. We all look forward to these times, glory in them when they arrive and mourn for them when they leave—usually without warning and far too soon. In A Caregiver’s Guide to Lewy Body Dementia, a poem by Lynn Davis says it all:

An Old Flame

Yesterday I had a chance encounter

With an old flame.

He was every bit as charming as I remember,

And I was so glad to see him.

We had dinner together and talked

About everything and nothing at all.

It made me feel young again

And yes, I even flirted a little.

It was just so nice

To spend an evening being “normal.”

I don’t recall exactly when he left.

I just looked up and John was gone

And Lewy had returned.

But there’s a flip side. It’s called “Showtime.” That’s when our loved ones are alert in the presence of someone other than ourselves…often someone that really needs to see them the way they usually are. Over and over we hear the story of LBD silenced loved ones shuffling up to the doctor’s office, barely able to walk. Then as soon as they see the doctor, their posture improves, the shuffling becomes a walk and they start talking in full, clear sentences. A Lewy-savvy doctor understands Showtime and plans for it. An initial visit should last long enough to give the Showtime a chance to disappear—a couple of hours or so. Some doctors ask for daily emails that go in the chart and show an ongoing record of behavior. Others may ask you to keep a daily journal and bring it with you.

And there are the family visits. On one hand, it is wonderful that the family—and the caregiver as well—can enjoy your loved one at his best. However, if you have been telling family about problems, asking for help, or even considering residential placement, they may think you are over-reacting. “He doesn’t seem that bad to me,” is the understandable response.

There’s the grown child who prefers not to entertain the idea that their parent might have a disorder like LBD. They see the Showtime and ignore anything else. “Dad’s slowing down some, but he looks all right to me,” they say. Again, time may be the answer. Ask that family plan longer visits; long enough to outlast the Showtime. Caregivers have also used audio recorders or video cameras to record their loved one’s behaviors for unbelieving family—and the doctors too.

Blended families can be even trickier. A grown step-child may blame the step-parent. “Dad’s fine. If he’s worse when we aren’t here, then it’s obvious that my stepmother is the one causing the trouble.”  I just finished reading Going Mad, by Carol Pendergrass. This is the ultimate horror story of LBD and a blended family. Whether you have a blended family or not, read it and be sure to take all the legal steps she recommends—early in your LBD journey.

When fluctuating cognition and delusions combine, life gets even more surreal. Remember, delusions are your loved one’s worst fears—seen by them as fact. (See my March 21^st and April 21st blogs.)  Harry tells his grown son, Clay, that his wife of ten years is trying to poison him because she has a lover. Harry has never been one to make things up and except that he seems genuinely frightened, he is acting normal—asking about the grandchildren, Clay’s wife, etc.  And so why wouldn’t Clay believe him? Oh, yes, there’s that diagnosis of Lewy body dementia—but that’s a lot of b.s. anyway—probably something else his stepmother has made up.  The answer here is to somehow educate Harry about LBD and get him to believe that he can help his father more by decreasing the stress in his life than by adding to the drama. If you have a Lewy-savvy doctor, family office visits might help. Harry will probably be more able to accept the doctor’s words than his step-mother's—especially if some hope and suggestions for things that Harry can do to help come with it.

And that’s the bottom line: education. The more Lewy-savvy your doctor is, and the more Lewy-savvy your family is, the less stressed your loved one will be. And lower stress means more Good Times for all of you to enjoy.

The Traumas of Mild Cognitive Impairment, LBD Style

Mild cognitive impairment seems to becoming more common—or more correctly,  more commonly diagnosed. In LBD, this often means that irrational behavior precedes obvious cognitive dysfunction. The person is able to remember well, appears to be able to drive and make the appropriate decisions about stopping, lane changes, etc, and is probably still able to keep up with a job. But there is faulty thinking that can result in poor, sometimes disastrous decisions,  or delusions that lead to paranoia and irrational anger, and hallucinations may have started as well.

We’ve heard of people at this stage making decisions that depleted joint bank accounts, deprived their spouse of many years of spousal retirement benefits, alienated grown children and friends, or angered bosses and customers. One sad and worried woman told of how her husband moved out—angry and making the usual irrational claims of infidelity—just when he was beginning to need her help as a caregiver. Obviously, there has been a change of personality in these people, of their outlook on life, and yet there’s no hope of declaring incompetency. They just don’t meet the cognitive requirements.

We have no answers for this. No easy way of dealing with it. Naturally, all the usual behavior management techniques we’ve discussed before may help, but at this stage, you may not even get a chance to use them before you find your empty bank account, etc. This issue has not yet been addressed adequately by the medical or legal communities. Yes, LBD is still young, still relatively unknown by the general public. But the issue remains. Competency requirements that fit Alzheimer's just don't always work for LBD. Any ideas?

There is one, if you can do it soon enough. Find an attorney who practices elder law as early in your LBD journey as you can. Actually, every couple should do this....even before there is any evidence of illness. Make all the decisions you need to make and draw up all the papers you need to have while your loved one can still participate. Then, armed with a power of attorney, etc., etc., (the etcs will differ with each family) you will be better able to deal with the messes that LBD can make. This isn't the complete answer, by any means. But it is a start.

Delusions of Unfaithfulness

Of all the questions we get about LBD, this is the most difficult. We addressed the issue in our March 2nd blog, but it deserves more attention.  Mary told us, “Art accuses me of meeting other men. A half-hour trip to the grocery store is a tryst with my lover. A chat on the phone with my daughter is phone sex.” Mary’s denials only make Art more certain of her desertion. She is at her wit’s end.

As  dementia increases Art’s feelings of inadequacy, he fears that Mary will no longer view him as a desirable companion. Because Lewy has damaged Art's thinking filters, what he FEARS is what he accepts as FACT. Thus in  Art’s mind, Mary IS deserting him. The more intense the fear, the stronger the delusion.

It’s easy to say what not to do about such behavior: Don’t try to reason with your loved one. That will only cause more agitated. He/she hears your claim of innocence as a denial of their fear.

It’s less easy to say what to do. You need to find ways to:

a)      Increase your loved one’s thinking filter so he can process his emotion. If he does not jump directly from feeling to fact, it will be easier for him to accept that you are not deserting him.
Dementia drugs, such as Exelon or Aricept, are fairly safe and often help to control behavior. That is, they may improve the thinking filter and decrease his delusions. Even if your loved one’s doctor doesn’t think  cognition drugs are needed yet, you might ask if they could be started with the goal of decreasing acting-out.

b)      Lower stress. Few of us function well when we are highly stressed. However, LBD both adds stress and lowers its threshold. Acting-out (in this case, delusions) increases with stress and decreases when stress is decreased.
Chapter 9 in  A Caregiver’s Guide to Lewy Body Dementia and our March 15^th blog speak to dealing with environmental and health issues to decrease stress.  Read these and use them as guides for eliminating things in your loved one’s environment that add stress.

c)      Substitute positive feelings for negative ones. The blessing of dementia is that it makes it difficult to hold two feeling/thoughts at the same time. Feelings, not thoughts or beliefs must be the target.
Perhaps the most effective intervention of all is to distract your loved one with positive feelings and happy thoughts. The stronger the happy feelings the more effective they will be. This takes some planning and preparation. Think about an event when you were having a wonderful time together—when your loved one felt secure in your love. A special vacation, your wedding, etc…. Then, gather together some props: photos, music, items with special meaning, etc.  When your loved one begins to act out, say something like, “Oh, honey, look what I found. Didn’t we look sweet in these photos?” Once you have his/her attention, start talking with the goal of increasing the happy feelings. Remembrances of happy feelings in the past will usually work better than talking about present feelings. Don’t worry if it doesn’t work the first time. This is a learning process. Next time, try again, using what worked and changing what didn’t. Your loved one likely won’t remember what you did or said anyway. It's a new event each time.

d)     Add a buffer so that his feelings aren’t so intense. Since the strength of the delusion depends on the intensity of the feeling, this may decrease or even end the acting-out.
If none of the above tactics are enough, you and your doctor may want to consider another drug, perhaps one of the more Lewy-safe anti-depressants. And, while we hate to even suggest behavior management drugs, they do have their place. Seroquel, for instance, can be quite effective with few apparent side effects. However, research has shown that dementia patients who take even second tier anti-psychotics like Seroquel risk an earlier death than those who do not take these drugs. That said, there may come a time when you choose to balance quality of life against length of life.

e)      Consider residential care. If safety or extreme caregiver stress becomes an issue, this may be the best, if unwelcome, answer.
This is a step that few caregivers want to take, especially while their loved one is physically able. However, with Lewy body disorders, acting-out behaviors sometimes start before other symptoms and advance to being too difficult to handle at home before the physical load does. Sometimes, even when all of the above steps have been tried, the acting out will continue. At such times, caregivers must recognize that anything that puts them at risk also puts their loved one at risk. Thus, if they become so stressed out that they cannot function well or if their loved one’s acting out becomes physically dangerous, placement in a Lewy-savvy residential facility may be the answer.  Caregivers who have fought this step but finally made it, often say, “I’m a better caregiver now. I can give my loved one so much more of me, now that I have regular time to get away and regroup.”

Can You Tell Your Story --Briefly?

Here's a challenge for you!  Can you tell GE Healthcare how dementia (or any other neurological disorder) has touched your family in only 140 characters? They want stories “to inform their campaign from the grassroots.” Go to http://www.mindonlinecampaign.com/ and give it a try.  Let your story be heard. We did.

Jim wrote:  My wife had Lewy body dementia, was diagnosed with AD, and got acting-out drugs that made her life worse. Now I teach LBD awareness.

 (133 characters. Spaces and punctuation marks count!)

Helen wrote:  My sister had Parkinson’s but no dementia, had surgery, and began having scary delusions—a forerunner of Lewy body dementia.

(124 characters)

What’s your story?  Go submit it and then, come back and share it here.

Oh, and while you are at it, consider becoming a follower of our blog. We plan to discuss more about acting out in future blogs and you won't want to miss them. Thanks to all who read, follow or comment on our blog.

Tools for teaching and learning about Lewy Body Dementia

The Many Faces of Lewy Body Dementia

Some say that if you put Alzheimer’s disease (AD), Parkinson’s disease (PD) and schizophrenia in a bag and shake them up, you’ll get Lewy body dementia (LBD). But that’s not all; add sleeping disorders and autonomic nervous system dysfunctions and you’ll be closer to describing this multifaceted disorder. However, today we’ll only talk about the first three and save the others for later.

LBD is similar to Alzheimers, in that it is a loss of cognitive abilities. However, AD folks tend to lose memory skills first. They forget words and things. LBD folks lose executive skills first. They become unable to think, do sequential tasks, plan, or make decisions, judgments or choices. Even more important, LBD folks may have severe drug sensitivities to drugs that Alzheimers folks can usually take with comparative safety.

Concern: These two dementias often occur together. Since AD is most common, someone with both disorders will most likely be diagnosed first with Alzheimers. Thus LBD’s severe drug sensitivities may not be discovered until the damage is done.

LBD is related to Parkinsons. There are two types of LBD. Like PD, both are caused by Lewy bodies in the brain. When dementia starts first, this is called Dementia with Lewy bodies (DLB). They may never have major mobility problems and are the ones most likely to be diagnosed with Alzheimer’s disease. People who develop PD first and then go on to develop dementia symptoms are said to have Parkinson’s disease with dementia (PDD).

Concern: Drugs that improve mobility decrease cognition. When a person has PD, they usually see a movement specialist who may view the dementia as an unavoidable symptom of advanced Parkinsons rather than a possible side effect of the PD drugs. When given a choice, caregivers will almost always chose cognition over mobility for their loved ones, even when it means more work for them. They may not get this choice with a movement specialist.

LBD is sometimes compared to schizophrenia because perceptual dysfunctions like hallucinations and delusions are so common and because they tend to very start early in the disease process. In fact they may be the first dementia symptoms, although they are seldom recognized as such until other more cognitive symptoms such as the loss of executive skills appear. One big difference is that people with schizophrenia often hear voices telling them what to do, while LBD hallucinations almost never include voices at all.

Concern: When acting-out behaviors start before more recognizable dementia symptoms, people may see a psychiatrist first. The behavior management drugs most used by psychiatrists are those most dangerous to LBD folks. Even one dose may cause serious, permanent motor or cognitive problems.

The bottom line is that when any of the above symptoms are present, everyone involved should be aware that LBD could also be present, no matter what a person’s diagnosis. If you are wrong, no harm is done. If you are right, you may avoid the damage that can come with LBD’s drug sensitivities. You may also be able to identify “inappropriate behavior” that is alienating co-workers, family and friends as possible early LBD related acting-out behavior. Naturally, you should share your observations and concerns with your loved one’s physician and if appropriate, ask for a referral to a dementia specialist.

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.