Embracing Lewy

When my son, Ken, was in grade school, he came home one day with a dog—a big hairy thing with little to recommend her as a pet. Ken said she followed him and even when he told her to get lost, she just slinked along after him. “Can we keep her, Mom?” Foolishly, I said yes. Ken named her Cleo.

Cleo peed on the carpet and chewed up the sofa and stole food off the table.  She spread hair throughout the house and wouldn’t come when we called her. Sometimes I wanted to beat her, but I’d seen beaten dogs—they could be ferocious, giving back what they’d learned. And so instead, we used affection and continuity. Cleo was never the well-mannered lap dog I’d have preferred, but as we accepted her as a member of our family, she did become bearable and even at times, enjoyable.

Lewy is a lot like Cleo. It comes uninvited and refuses to leave. If you try to ignore it, it acts out and makes your lives miserable. If you fight Lewy and try to beat it into submission, it can become ferocious. But if you accept that it has come to stay and treat it gently, even embrace it with love, Lewy will cause you much less grief. 

There were things that would set Cleo off—like car horns. When one honked, she’d go berserk, barking and racing around and around long after the honking had stopped. I learned that I could calm Cleo down by giving her something she liked. I could give her a bone and she’d forget the horn and chew happily on her bone for hours.

Stress sets Lewy off too—almost any kind, from environmental to pain to the frustrations of the disease itself. And like Cleo, Lewy likes certain things too: Calmness, security, continuity, loving touches, simplicity. Make these happen, and Lewy will act out less and be easier to live with.  

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.

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!

Nearing the End of the LBD Journey

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:
Cognition degeneration:Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time.

o   LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well.

·         Communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding. 

o   LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking.  The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.

·         Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and our book, The Caregiver’s Guide to Lewy Body Dementia.

o   LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.

·         Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.

·         General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.

o   LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore, complications like pneumonia, urinary tract infections or falls can be life threatening.  Good patient care and early detection of problems becomes very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease.

·         Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.

o   LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

Aggressive vs. Palliative Treatment: End of Life Issues

The New York Times 2007 article, Treating Dementia, but Overlooking Its Physical Toll, talks about how many of our loved ones, towards the end of their lives, are subjected to unnecessary life prolonging treatments such as dialysis and colonoscopies. Author Tara Parker-Pope says this is because so few recognize dementia as a physical, as well as mental disease.  Fast forward to 2012. Parker-Pope's article is still relevant. People, including those in the medical community, still have trouble accepting that end-of-life needs are different. These treatments have their place when we are younger, healthier. With an eye towards a better future, most of us are willing to put up with some discomfort and inconvenience, even surgery.

But this changes when the end of life is near. Then, quality of life becomes more important than a little more time. This is especially a concern with LBD, which causes so many physical problems in addition to the dementia. There comes a time when treatment for something such as kidney failure will make little difference—except to decrease the quality of one’s final days.  Our LBD folks are also especially sensitive to stress. These treatments will almost always add stress of some sort—which increases LBD symptoms—and probably increase the progress of LBD as well. Who’s to say whether these treatments really extend life at all, when this is taken into consideration?

A common example of “aggressive treatment” is the use of feeding tubes with an end-of-life dementia patient. Dementia is a debilitating disease. As the brain dies, so does the body—and its need for nourishment. Not only can the tube be an unnecessary torture, but the food, going into a system no longer capable of processing it, adds to the discomfort.  (Think about what it’s like for you when you feel very constipated.)

It’s not just the treatments. It can also be a state of mind. Carrie is a good example. Early in the LBD journey with her mother, she learned to aggressively push anything that might delay the dementia.  She searched the internet for the newest ideas and treatments. She pushed her mother to get out and socialize, to move and exercise, to drink enough fluids, to eat enough of the right foods, and on and on. The experts tell us all of this will help the dementia progresses more slowly.  Carrie wanted the best for her mother and so it bacome a habit—a way of life.

 But dementia DOES progress, and no matter how she tried, the time did eventually come when their journey with LBD is almost over. Accepting this was seldom easy. She didn’t want to lose this person she held so dearly. Of course, she didn’t—but it is no longer her choice. Her mother had moved into a different space with different needs now. At first, Carrie felt as though she was failing. Maybe she just needed to work harder, push a little more. The failure would have been if she hadn’t been able to move past her own needs and see that it was time to change her goals, her behaviors and her expectations to support her mother’s end-of-life need for peace and comfort.

Now is the time to relax. Carrie‘s aggressively proactive approach, once so helpful, was no longer supportive of her mother’s needs. Now is the time to sit and talk and laugh and touch and just be there. Daytime sleeping, once such a concern, is no longer something to worry about; 20 hours out of 24 is not unusual at this stage.  She may also need to take a stand against medical personnel who have been trained that they must work to extend life, no matter what the cost.  The good news is that with palliative treatment, there’s less stress and thus, reduced LBD symptoms—and maybe a longer life. 

References: Tara Parker-Pope’s Well blog and article.

Also:  A Caregiver’s Guide to Lewy Body Dementia, Chapter 14
Website: LBDtools.com

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

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?

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.