Dealing with Resistance, Part 2

Notice: We are well into our summer season of traveling and from this day until the middle of October, when we return home, I will be posting blogs every two weeks.

This week's blog is the second in a two-week series of blogs in answer to Joan's post:

The main time my husband I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Last week's blog was about Joan doing her homework, setting the scene and practicing being positive. Now, she needs to take a deep breath, put on her smile and go to work. If you haven't read last week's blog go do it now before you read more.

Joan, if your husband is resisting, he likely sees you as his tormentor. As long as this is so, just being positive isn't enough. Instead of trying to reason with him (hopeless!) or ordering him to be compliant (anger-making!), agree with him and become his ally.

• Help him to feel heard: Listen. Nod your head. Agree with his complaints.
• Help him to feel understood. Coo soothing words of sympathy. 
• Change the focus of his anger from you to what you want to change, in this case, his soiled pants. "Those awful pants are making you uncomfortable, aren't they? Let's get rid of them."

(Warning: Gentle touch is a great help, but not until the anger is defused. Otherwise, you are in danger of being hit as your husband strikes out in defense.)

Now that you are both on the same side, you can address any remaining fears. Work to figure out what the triggers are.

• One of them may be you! He may be reacting to his fear of giving up control--of being treated like a child instead of an adult. Work to treat this like a cooperative event as much as possible. Let him do what he can himself and include him in the task every way you can, even if it is simply to tell him what "we" are doing.
• Use your knowledge of your husband to think of any other fears that might be driving his resistance and think of ways to neutralize them.

With his fears decreased, his anger will dissipate and he will be able to start mirroring your positive attitude. With more positive emotions in control, he will be more agreeable and less resistant. Make sure you stay positive and give him lots of kudos. You can't overdo the compliments! Gentle, un-custodial touching (that given voluntarily and not needed for the job at hand) works wonders here. If you've planned for music, use it now. Music and its rhythm can help you promote togetherness, and the idea of working together. You can sing, but if you need your husband to help you, don't expect him sing too. He can do only one thing at a time.

If he starts getting resistive again, it means the fears are returning. This is especially likely to happen if you are too task oriented. Now is the time to take advantage of his short attention span and use distraction to change his focus from what he's beginning to worry about again to something pleasant. If you wait too long, the negative emotions will take over and you'll be back to square one. A bribe often works well--"Let's get this done so we can go have some ice cream."

Once the job is done, pile on the compliments, hugs and lots of gentle touching. And go get that promised ice cream. You need it too!

For more 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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Dealing with Resistance, Part 1

This next two-week series of blogs is in answer to a question from a frustrated care partner:

The main time my husband and I argue is when he goes in his depends and refuses to let me change him. It is a horrible nightmare. Wish I knew what to do. Joan

Sadly, your concern is far from unusual, Joan. It used to be that you could reason with your husband, changing his belief and changing his behavior. Reasoning is now useless. It requires thinking skills a Person living with dementia no longer has. Think of the process this way now:

• The surrounding environmental triggers an emotion. These can also be residual, that is, something perfectly benign may trigger an old fear.
• This emotion drives your husband's beliefs. Most driving emotions are negative. Designed to motivate, they are strong, pushy and long lasting.
• Your husband's beliefs drive his behaviors. Once he has made up his mind, he CAN'T change it. Can't, not won't. But he can change his focus--with your help!

Your first step is to educate yourself. Most care partners simply want to know HOW to deal with these difficult issues. However, until you know WHY they are happening, you probably aren't going to be very successful. It will also be more difficult for you to take what you've learned and apply it to a different issue.

• Learn why your husband's dementia-damaged brain won't allow him to change his mind.
• Learn why he can change his focus and what the difference is between changing his mind and changing his focus.
• Learn why you are the one who must change your expectations, your attitude and your actions.
• Learn why negative emotions motivate and drive behavior while positive emotions encourage calmness and relaxation.
• Learn why negative behavior is often triggered by the fear of something to be avoided.
• Learn why it is so important that you start positive and stay positive, no matter what.

This information is on our website, in our past blog entries, in our books (see below) and in Teepa Snow's free YouTubes.

Next you must prepare. "Set the stage" so that there are fewer triggers--fewer things to avoid.

• A common trigger when skin is about to be exposed is the fear of feeling cold. Make sure the bathroom is cozy warm before you even start and have all the supplies handy so the job won't take any longer than necessary.
• If mirrors trigger the fear that a stranger is watching, remove or cover them.
• If you can think of other ideas to help your husband feel more comfortable, implement them. It is worth the effort!

To start positive and stay positive in the face of his resistance takes practice and determination.

• Being positive does two things. It prevents you from escalating your husband's behavior the way being frustrated would and gives him something to mirror. He can't change his emotions himself, but he can mirror yours.
• Make the practice of being positive a part of your preparation, and think about how you can stay positive even in the face of his resistance. You want to be believed and so you must smile from your heart. It won't work otherwise!
• Take some time just before you start to make a conscious choice to be positive no matter what. Think of the love you feel for him and be determined let it show, even in the face of his resistance.

Plan your distractions, the methods you will use to change his focus. Each person living with dementia is different and so the distractions that work best will be different for each one too.

• Bribes are always a good bet and ice cream is a favorite. Make sure you are prepared and able to provide whatever you use as a bribe quickly.
• Music and rhythm can help you focus on working together. Unless you plan to do the singing yourself, set up your music delivery system ahead of time so that all you have to do is push a button.

Next week: The real event!

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

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

I Want to Go Home, Part Two

Merry Christmas everyone!

A month ago, the blog was about the PlwD* who wanted to go home and suggested that the care partner would get further if they first saw the issue from the PlwD's point of view: That "home" equaled comfort and discomfort equaled "not home." If you haven't read that already, I'd suggest that you do it now. Just click here.

When you try to convince your loved one that they are indeed home, this feels to them like they are being lied to which generates more negative feelings, over and above the ones of discomfort that initated the feeling of not being home in the first place. That is a very short synopsis of that blog, but if you haven't read it, you would do well to do so before you read further here.

The first step is to validate the PlwD's feelings:

• Unless you validate PlwD's negative feelings, you will not be able to redirect them to something more positive.

Try it. Imagine you are the PlwD and someone tells you that you are wrong. "But I know," you say. "I know that this isn't my home." If that person still insists on their way, what happens to your negative feelings? Did they increase? Now imagine that the person said something like, "OK, but I need to do something first." or "Tell me about home" or speaks to your feelings by saying something like "That must feel scary?" Can you feel the release? Can you feel the relief that being heard, being understood brings?

• The PlwD have a short attention span. Once the negative feelings are deflected, they can be redirected.

Try it: First imagine that you are experiencing the above negative feelings. Can you feel the resistance to a distraction, like the offer of a cookie? That's normal. The job of negative feelings is to keep a person on tract until the need is met. Next, re-imagine the release you felt when you were validated. Now how about that cookie? Notice how much more receptive you feel. With fewer negative feelings, you can respond to the positive feelings engendered by the idea of a yummy cookie.

And so the bottom line is:

•  Speak to the underlying feelings instead of arguing, explaining or reasoning.

Once the negative feelings have been validated their job is done and they will leave.

• The PlwD lives in a black and white, either/or world. Either they are angry or they aren't. Either they are happy or they aren't. Therefore, once the angry feelings are validated, the PlwD is open to distraction almost immediately.

Then you can deflect the PlwD's train of thought with something they enjoy and it will usually work. By the time they've had their treat, they will likely be even more relaxed and will have forgotten their prior anxiety.

Another method:

If the PlwD is mobile enough for causal car trips, agree to take them home, but stop "on the way" for a treat. As above, when the PlwD feels heard, their negative feelings decrease enough to be replaced by the positive ones from the ride and the treat and the changed environment. Since they can't think of more than one thing at a time, they "forget" their concern about their home. By the time they return, they will usually "see" it as their home, especially if you make sure there are plenty of positive feelings accompanying the return...smiles, hugs, and such--remember "comfort" means "home."

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
(Substitute your loved ones name here!)
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

I Want to Go Home, Part One

Almost ever care partner has heard this request. Most start out by telling the PlwD,*  "But you are home" only to find out that instead of making things better it made them worse. The same is true for the care partner who tries to explain to a PlwD in a care facility that this is now their home.
Look at it from the PlwD's view:

Something isn't right. I don't really know what's wrong but I do know that when I'm home I feel comfortable and safe. Since I don't feel comfortable and safe right now, I must not be home.

"But you are home. We've lived here for 20 years!" your care partner says.

That can't be. What is she trying to tell me something that clearly isn't so. This isn't my safe, comfortable home.

"Look around," she tells you. "See this is your very own chair, and that's the carpet we bought a few years ago and..."

I have to say she's gone to a lot of trouble to fool me. The chair and the dresser do look like mine, but I KNOW this isn't home. I wouldn't feel the way I do in my own home. She can't fool me. I'm so mad.

Does this sound like some of your interactions, but from a different point of view? Here are some basics to remember and some suggestions for putting yourself in your loved one's frame of mind. To get the most out of this, rely on what your senses and emotions first tell you. Don't think about it. PlwD don't--they can't.

• Emotions trump reality. What the PlwD feels is more important that where they really are. "Home" means comfort, thus discomfort means "not home."

Try it: Think about how you feel about "home." Is this the place where you feel most comfortable, most safe? Is it where you want to go when you don't feel well?

• First impressions are all there is. The PlwD doesn't do the abstract thinking that change requires. The PlwD bases their impressions on the first feelings they experience after they perceive something and that's what they are stuck with. Their brain can't change.

Try it: What are your first impressions, your first feelings? Imagine that someone tells you something that you know isn't true. Say, that the blue car you are looking right at is really red? React at face value. Don't add or subtract anything--that takes abstract thinking. So now, go back and look for your first feelings. Incredulity ? Affront? Disbelief?

• The PlwD bases further feelings on their initial response. That is, once the PlwD decided that this isn't home, they will respond just like you did about the car---and with negative feelings about being lied to.

Try it: Imagine that someone that you depend on seriously tells you that this isn't your home. Would you feel lied to? Hurt? Belittled? Angry? Scared?

• The PlwD responds to negative feelings with negative behaviors. They will do the first thing they feel like doing without considering the effect or consequences.

Try it. What is your first impulse upon feeling lied to? What is the very first action you consider? Do you want to strike out, resist, argue, withdraw, hide, cry? You can choose not to do these things but the PlwD can't. If they feel it they will act it out.

All is not hopeless. With this inside view of the PlwD's cognitions, a care partner can choose words and actions that will help a PlwD feel more at home. Next blog will be about "going home."

We love and welcome comments but we will not print any that advertise a product or a commercial website. This is especially true for testimonials about miraculous Parkinson's cures.

* Acronyms:
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD, LBD, DLB, MCI, PD, PDD, etc: person/people living with dementia
        (Substitute your loved ones name here!)
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia

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, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

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!

Assistance Dogs and Dementia

There are several ways pets, especially dogs, can be helpful with our LBD loved ones. In her article about how pets bring happiness and healing, Sue Cartledge talks about therapy dogs. These well trained animals—which can also include other pets such as cats, go with their owners to visit residents in memory care facilities.  Residents talked about how “when I held the dog, the pain in my hip went away” and there were also reports that interacting with the pets improved communication skills.

Mary Pat Baldauf tells about her father, with LBD, and his pet dog, Gizmo, on the Every Woman blog site. This little dog provided her father with unconditional love, friendship and an ever present alarm system that enhanced his final days.

But the article that really impressed me one in the Alzheimer’s Weekly about Nyja, an assistance dog. Therapy dogs are wonderful in a residential setting but don’t help the family where the loved one is still at home. And it’s the fortunate family who finds a dog, like Gizmo, who can become such a help without formal training. 

However, the Canine Companions for Independence trains Assistance dogs like Nyja to provide a multitude of services, from simple companionship to physical help like picking up something that’s been dropped to alerting the caregiver if their charge is in danger or guiding a lost owner home.

This doesn’t happen overnight and it isn’t for everyone. First, the training is similar to that for a service dog, except that it includes the dog, the person with dementia and a “facilitator”—usually the caregiver. Both patient and caregiver need to be “dog” people. The patient, because there needs to be a bond with the dog. The caregiver, because taking on the care of a pet is an added responsibility in an already full schedule. Also, training needs to start as early in the progress of the disease as possible, while the patient still has some ability to learn. Once the training is done, the benefits are many. Here are some:

•          Decreased social isolation and improved communication skills.  Dogs are social animals and people are attracted to them—and by proximity, to their owner. 
•          Reduced agitation. The dog’s unconditional love and acceptance tends to reduce anxiety and agitation. 
•         Increased companionship. The patient always has a friend nearby, thus reducing loneliness.
•          Increased physical activity. Depending on a patient’s mobility, they may be able to groom the animal, toss a ball, or even go for walks.
•          Increased pleasure. An ever present, undemanding companion makes life more pleasant.
•          Caregiver alert: The presence of an Assistance dog is like another pair of eyes, with an alarm system for the caregiver. The dog can warn a person in another room if their charge needs help.
•          Increased feelings of usefulness: Chores like grooming and “being responsible” for their pet serve to make a person feel useful.
•          Less stress: The calming presence of an accepting pet calms and decreases stress.
•          Increased clarity, windows of memory, etc.: Due to the decreased stress!
•          Decreased depression: Probably due to “all of the above.”

If this subject interests you, we highly recommend that you click on the links in this blog and read the other articles. And feel free to share some of your own experiences as comments!

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.”

Finding Good Books about Lewy Body Dementia

Amazon sells many books about dementia and caregiving. But which ones are the best for the LBD caregiver? Our new website store, the LBD Book Corner, showcases just such books. Naturally, it starts out with our own Caregiver’s Guide to Lewy Body Dementia. Although this is still the only layman’s resource book specific to this disorder, there some great personal stories about living with LBD available now and you can find them in our store. We’ve also added some excellent books about caregiving in general and some about communicating with people who have dementia and dealing with acting out. All of the books in our store have at least four star reviews—usually five. Once you click on a book and go to Amazon, do check out its reviews. They tell you a lot about what the book is like.

When you go to Amazon via the LBD Book Corner and buy anything, they pay us a small commission. In this easy way, you can help us spread awareness about Lewy body dementia. Every cent goes into our working fund. Right now we are updating our “do-it-yourself” LBD training program for facilities, working on a video, maintaining this blog, writing a new book and planning our summer tour. Pretty good for a couple of “old retired folks,” huh?

And so, let’s help each other out. We’ll help you find the best LBD books and you help us spread the word. Just remember to go to Amazon.com via our website. It’s amazing what they sell, by the way-- books, appliances, clothes and on and on. And tell your family, neighbors and friends too. Thanks for the help! 

Find the LBD Book Corner at LBD tools.com. Just click on the Store tab at the top or bottom of the page--or follow any of the above links directly to the store.

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

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.

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.

Dementia and Creativity

For the last six weeks, the Aspen Ridge Memory Care Center in Bend OR, (http://aspenridgememorycare.com/) has been focusing on resident creativity, hoping to increase quality of life, thus decreasing behavior symptoms and the need for drugs. Director Terrye Alexander said, “We replaced activities like Bingo, which were meaningless to our residents, with creative activities." She showed us beautiful paintings, thoughtful poems, and colorful sculptures—all done solely by residents. And not just art and poems--they also have a choir and a dance group.

“We build on past experiences," Terrye explained, pointing to a not-so-well manicured courtyard. "We leave the weeds out there for our our two master gardener residents to pull. Past housekeepers/housewives can set the tables in the dining room and fold laundry.” Past secretaries can sit at a desk in a small room, with an old fashioned typewriter and a phone, type up mailing labels and put them on envelopes. "It was really hard to find that typewriter, but it was worth it," Terry commented. The same small room becomes a counseor's office on occasion. Terrye told us, “One of our residents was a school counselor. When we have high schoolers come here to do public service, she sits here in her ‘office.’ We tell the teens they can go in and tell her anything they wouldn't want to tell their parents.”

Down the hall, in a room where some surprisingly alert residents were guessing the proverb or saying a staff person was trying to illustrate on a dry erase board. “She isn't even a very good artist, but we are amazed at how well they do.” Terrye and her staff also try to get the residents more active—in fun ways. “We had a beach party last week, with sand on the ground outside, and played volley ball.”

Already, Terrye says they can see a change in behavior. The residents are busier, more interested in life and more alert. “We are using fewer drugs and yet we have few behavior crises,” she said. “And with the addition of more physical activity, we’ve also seen more stability and less falling.”

Family caregivers of LBD loved ones can adapt many of Terrye’s ideas for home use. And don’t forget simple touching. Mike De Sousa, in his Column #34 (http://www.ablestable.com/) reminds us that sometimes “we can forget that being creative is not always focused on the skills of the mind, but as much on our sensory connection with those close to us. As our loved ones get nearer the end, touch may be the most comforting type of creativity, transmitting a reassuring sense of connection and peace.

The Beatitudes: A Facility That Does Understand LBDers

The Beatitudes (http://www.beatitudescampus.org) is nationally recognized for their care of dementia patients who, like many of our LBD loved ones, have been shuttled from one facility to another as “too difficult” or “too aggressive.” And even more impressively, they do it—and do it well—with few drugs and no increase in staff.

Beatitudes Training Director Tena Alonzo was giving us a tour of the facility when a woman came down the hall and stood silently in front of us, radiating tenseness. “Hello, dear,” Tena said as she took the woman’s hands in hers and simply stood with her. After a while, Tena let go and reached up to gently cup the woman’s face. “I knooww,” she crooned. The woman stood there with little expression, passively accepting what Tena did and said. Finally, the interaction must have felt complete for she turned away and left. “She has such a hard time talking,” was all Tena said to us.

This interaction is a powerful example of how the Beatitudes works. Even though Tena knew we were on a tight schedule, she ignored us for those few minutes and made herself totally present with the woman, moving and talking at her speed, in her time—and she let the woman terminate the interaction.

Tena and the rest of the Beatitudes staff have changed the rules and the methods the industry thought necessary for dementia care. And then they did research showing that their methods work. They have found that when a facility provides a stress-free environment and trains their staff to recognize and respond to dementia patients' needs, these patients are more contented, less disorderly and seldom need those drugs that are so dangerous to our LBDers.