Two Types of Lewy Body Dementia

Last week the blog was about the symptoms leading up to LBD. This week is about the two different types of LBD. Last week's blog mentioned that LBD can show up either before or after movement issues. This is important because how it originally shows up determines its name.

If the Lewy bodies follow that path described in last week's blog, and travels from the midbrain into the cerebral cortex, then the dementia that follows will be called Parkinson's with dementia, or PDD. However, about 50% of the time, the Lewy bodies start in the cerebral cortex and spread out from there. When that happens, the disorder is called dementia with Lewy bodies. In each case, symptoms depend on the area of the brain affected. That is, when the Lewy bodies are in a certain area of the brain, the symptoms will be similar, no matter where they started. Therefore, Lewy body dementia has become an umbrella term that refers to both kinds.

Dementia with Lewy Bodies (DLB): This describes the type of Lewy body dementia that starts without motor symptoms. Diagnosed onset is from age 40 through 80, with the average in 70's. It is not uncommon for a care partner to say later that they remember certain symptoms starting much earlier, especially RBD and anger management issues.

First symptoms are often not recognized because they seldom include memory loss:

• Active dreams (RBD) can start many years before any mental problems are noticed. Jim's first wife, Annie, had these. They just laughed about them, and considered them an idiosyncrasy that didn't really cause any problems.
• Executive skills gradually fade. These include skills such as decision making, doing sequences, planning, and thinking in general. One woman, a supervisor in a busy office had to take an early retirement. She had became unable to file reports; her ability to alphabetize in a sequential manner was damaged. People with LBD tend to loose these skills well before losing the ability to remember names and events.
• Anger management issues are common, due to diminished impulse control and damaged thinking skills. That is, a person may perceive a slight or other problem where there is none and then become angry when others don't see the same issue. In the workplace, this can be serious. One man, a well-loved school counselor began angrily accusing his work-mates of lies and such. When his irrational behavior spread to his students, he was warned that unless he changed his behavior, he would be fired. Luckily, he had a driving accident that required him to see a doctor. The doctor diagnosed him with LBD and he was allowed a medical retirement.
• Hallucinations are another early symptoms. They are common with most dementias, but tend to show up much earlier with LBD than others such as AD. In fact, they are often the first symptom recognized as a true problem, and the one that drives a couple to the doctor.

Parkinson's with Dementia. When person with Parkinson's (PD) begins to have mental issues, this is called Parkinson's with Dementia (PDD).We believe that everyone with PD will eventually develop some dementia symptoms...if they live long enough. That usually starts about 15 years after a PD diagnosis, but it can be much longer. Onset for PD can be as early as 30 but is more likely in the 60's. (However, people with early-onset PD are less likely to experience early dementia.) The person who arrives at dementia via Parkinson's, has some advantages and some disadvantages.

The advantage is that most people are aware that dementia can be a symptom of PD. Therefore, when the odd behavior starts, people around them are more likely to recognize it for what it is and not, as in the example above, a behavior issue that needs to be changed. With PDD, the first symptoms are usually attributed to PD alone because they occur so often with it. Active dreams and slower thinking both fit this category. But when hallucinations appear, a doctor will usually start considering the possibility of dementia. By then, executive skills will likely have been affected as well.

The disadvantage is that that PD doctors are movement, not dementia, specialists. Preserving mobility is their primary goal. However, PD meds are anticholinergics. That isn't a problem until the Lewy bodies get into areas of the brain where they begin causing cognitive symptoms. Then the PD meds may increase cognitive symptoms. With PDD, a person needs a doctor that understands that treatment is a balancing act, with some mobility forfeited for better cognition, and vice versa.

Mixed Dementia. When types of LBD are discussed, mixed dementia also needs to be addressed. The truth is that people usually don't have just one kind of dementia. Even if a person is only diagnosed with LBD, they are likely to have Alzheimer's as well. Or maybe they have vascular dementia. Each of these will have different early symptoms and this cause a doctor to have difficulty with the diagnosis. The bottom line is that if there is a possibility that a person has LBD, that is the one to be concerned about because of the drug sensitivities involved. If you treat a person as though their dementia is LBD, they will do fine, no matter what kind they have. If you don't, they could be given a drug that LBD doesn't tolerate well, with possibly dire results.

For a much more involved description of all of the above read our books (below).

Next week's blog will be more about the two types of Lewy body dementia...the kind that starts with PD and the kind that doesn't.

Acronyms:
LBD: Lewy body dementia
AD: Alzheimer's disease
RBD: REM sleep behavior disorder (also called Active Dreams)
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
MCI-AD: the form of MCI that precedes AD
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.

Gifts We've Received

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

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

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

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

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

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

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

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

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

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

Amazon has books--finally!

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

Click here to go to the LBD Book Corner

LBD: Parkinson's Dark Secret

Dr. Graham Lennox, of Cambridge’s Regent’s College, called dementia “the dark secret of Parkinson’s disease.” Nancy, a surviving LBD spouse, agrees. In 2006, Nancy’s husband, Del, was diagnosed with Parkinson’s with dementia (PDD). “We were shocked,” Nancy said. “We’d been dealing with his Parkinson’s for eight years—attending the support groups, listening to all those lectures—and yet, no one, not even Del’s doctor, had mentioned dementia until that day.” Nancy’s voice caught. “We thought we were coping, but this hit us hard. We weren't prepared.”

There were several reasons for Nancy and Del’s lack of information in 2006. Years later, these reasons still exist:

a)      PDD is a “new” disorder. Dementia was not even recognized as a Parkinson’s symptom until the early 1990s. Until then, it was considered to be two diseases: Parkinson’s and dementia, likely Alzheimer’s. In 1994, “Parkinson’s disease with dementia” was included in the DSM-IV, the basic diagnostic manual for mental disorders, and added to the insurance codes. It takes at least a couple of decades for awareness of a “new” disease to develop.

b)      PD doctors are movement, not dementia, specialists. Neurologists who specialize in treating Parkinson’s focus heavily on movement issues and are less likely to be trained to recognize early signs of PDD. Thus their patients’ dementia may go untreated until it is so severe that it can’t be ignored.

c)      Cross-sectional studies don’t tell the true story. Although dementia has finally become recognized as a symptom of PD, Parkinson’s websites often quote cross-sectional studies, which are a  single “snapshot” of a specified group of people—in this case, people with PD. These usually report a 10% to 30% rate of occurrence, numbers that make the possibility of impending dementia easy to ignore—or deny. Cumulative studies, which are of a group of people over time, show a different picture, with from 65% to 80% of Parkinson’s patients eventually developing dementia.

d)     Parkinson’s disease with dementia is often considered a symptom of late stage PD.  Although the possibility of PDD does increase with age, dementia can occur at any time, sometimes within months of a Parkinson’s diagnosis. Additionally, recent studies have found that mild cognitive impairment (MCI-LB), a major risk for eventual PDD, is often present in PD’s early stages—even at diagnosis.

 “Please spread the word,” Nancy begs. “Don’t leave other families in the dark as we were.” That’s our goal with this blog, our trainings, our book and our bookstore. You can help by telling others about these and about Parkinson’s and its connection to Lewy body dementia.

Who Have YOU Told About LBD?

October is Lewy Body Dementia Awareness Month. It’s up to each of us to make a difference. Each person we tell, each person to whom we explain the seriousness of an incorrect diagnosis, each doctor we educate, each residential care facility we teach, they all count up. They count up in longer lives with more quality of lives for our loved ones because there’s less stress and less misuse of those LBD sensitive drugs. They count up in more cooperation and less frustration because we are finally dealing with people who KNOW.

But there’s still much to do. Just this week, we heard from two women on different sides of the nation. Jill’s husband is in a hospital and the hospital neurologist has decided that his previous diagnosis of LBD is wrong—he is “too functional” to have dementia and so he has some sort of delirium—and needs antipsychotics, of course. Sandra’s husband is also in early stage LBD and in his delusional paranoia, has rescinded her right to participate in his medical treatment. And so when her husband had minor surgery, no one considered his possible sensitivity to inhaled anesthetics. Sandy tried to warn the nurse anesthetist, but was ignored. Now he is nearly unable to walk, and very confused most of the time.

None of these professionals appear to be Lewy savvy.  Doctors who see patients for short periods of time don’t see what caregivers see. It is easy for those who aren’t aware to brush aside caregiver concerns. And sadly, there are many more like them in our hospitals and care facilities—and in our families as well.

Yes, our families. Over and over we hear stories of family members who refuse to consider that their parent, sister, brother, has LBD. Again, that fluctuation cognition gets in the way and they often see only the “Good Times.” Unlike the caregiver, they aren’t living with their loved one hour after hour, day after day. They don’t see the confusion, the acting out. And so often, they aren’t willing to listen to the ones who do know. They don’t want their loved one to have this dread disease—and so he/she doesn’t—as far as they are concerned.  And there’s no support, and much frustration and stress for the caregiver. Stress which is passed on to the loved one, of course, so that what the disbelieving family member means as support actually becomes harmful and leading to even worse symptoms.

How do we change this? First, we need to fund organizations like the LBDA who support research and awareness. Secondly, we need to speak up, often and loudly. When it is our loved one that’s involved, this often means going head to head with non-Lewy savvy medical personnel--and standing our ground. When it is family, we need to do all we can to expose them to information about this disorder. Our book, A Caregiver’s Guide to Lewy Body Dementia, is a good start. But there are many books, with interesting, easy to read stories about LBD out there now. You can find most of them in our website bookstore. Third, we need to talk about dementia in general just as we do about breast cancer or heart problems. It is still a condition that many people are ashamed of, afraid of and therefore, try to deny that it could happen in “my” family, “my” life. 

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.  

The Therapeutic Lie

“I’ve never lied to my husband and I don’t want to start now,” Marie said. “But when I tell him that what he sees isn’t really there, he gets agitated.

Joan said, “Harry gets really upset when he sees a lot of animals in our living room. I just open the door, shoo them all out and then tell him, ‘OK, they’re all gone now.’”

“When I’m on the phone to anyone male,” Janet said, “my husband accuses me of making plans to meet later and cheat on him. I’ve gotten so I just tell him it was my son.”

Harold added, “My wife resists going to the doctor and so I tell her we are going out for an ice-cream treat. On the way, I stop at the doctor’s, “just for a minute, to pick something up.” She doesn’t like being left alone in the car and so it’s easy to get her into the doctor’s office. They know what’s going on and so the nurse hustles us right into an exam room and the doctor shows up as soon as he can, saying, “While you were here, I just thought I’d come visit with you for a few minutes.” It works like a charm!”

Like it or not, learning to tell a therapeutic lie is part of being an LBD caregiver.  There are times when telling the truth would only make things worse. Sometimes you just need to avoid the truth, or shade it a little.  That’s what Joan did. She didn’t say, “Yes, there are animals in our living room,” but in an implied lie, she joined in Harry’s reality enough to get rid of his hallucinatory animals.  Janet actually did lie about her phone call because she knew that telling the truth would have fed into his delusions and increased his agitation.

Elvish (link) divides these therapeutic lies up into “going along with a mis-perception, withholding the truth, little white likes, and use of tricks.” Caregivers learn to use them all and most will say that it is definitely in their loved one’s best interest—to keep them from being stressed; to get them the care they need; to just plain keep peace. And no small part of the reason is to keep the caregiver from being stressed out as well. After all, when the caregiver is stressed, so is their patient.

The Family Caregiver Alliance put it this way: When someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office?

Allnursses.com recommends that one use therapeutic lying when “the truth would incite mental anguish, anxiety, agitation, and confusion.”

Even people with mild dementia agree that if a person is far enough along the dementia path that they can’t tell that you are lying, and that if it is for the person’s own good, then a lie is acceptable.(PubMed)  

Reduce Stress to Increase Other Treatments

Reduce Stress to Increase Other Treatments

We attended the Northwest Parkinson Foundation’s HOPE Conference in Spokane on August 25^th. We were disappointed that the speaker from Arizona, Dr. Santiago, wasn’t there after all to talk about the non-motor aspects of PD. Still, it was a good conference and we came away with lots of things to think about and consider. Dr. Monique Giroux spoke on Mindfulness and Healing. Expect to see blogs about subjects she brought up in the future like the value of positive thinking or yoga. Do go to her Wellness Center  and learn more about these and other non-drug methods for controlling your PD (or LBD). It is a limited resource at present but she promises that it will grow. Dr. Ford spoke on the importance music and exercise and had us all up dancing.

Dr. Giroux emphasized that exercise is important, but she said, we need to lower our stress for it to be very effective and supported what she said with impressive research results. Dr. Ford followed that up by showing us how we can use music combined with exercise that we enjoy to lower stress levels—and increase functionality, at least temporarily.

This made a big impression on me later as we were walking to our car, after having spent a lot of energy dancing to Dr. Ford’s music. I’m not used to exercising that much and I should have been tired, but I wasn’t. I’d been having fun and my stress levels were down. We’d parked what turned out to be a very, very long way from the meeting room and normally, by half of the way back, even without the extra exercise, my arthritis would have been at full blast and I’d have been hanging on to Jim, dragging after him, and wearily putting one foot in front of the other with my whole focus simply on making it to the car where I could sit down and recover. Instead, I found myself walking happily along beside him, my arthritis forgotten and with enough energy to be able to chat about what we’d just been doing and what our plans were for later.

And so, I thought, this “better exercise without stress” formula works for any issue—PD, arthritis, LBD, etc. It’s like a physical law: Reduce stress if you expect other aspects of your treatment to work. That goes for drugs too, I’ll bet—or good nutrition or adequate sleep. What do you think? Do you have any experiences like mine involving decreased stress?

Finding a Lewy-savvy Pharmacist—And Other Professionals

When people ask us about how specific drugs might interact with their LBD, we often suggest that they check with their local pharmacist. And so, of course, the next question is, “How do I find a Lewy-savvy pharmacist?” This is a valid question. Although it is the pharmacist’s job to be aware various drug actions and interactions, they too, may or may not have had the training they need to be Lewy-savvy. And so it’s a good idea to check this out ahead of time.

Go to wherever you get your prescriptions filled and ask the pharmacist some LBD questions to which you know the answer. If you like the answers to these questions, you can probably trust their answers to other questions. However, remember that the same pharmacist may not always be on duty, and so be careful to ask for names and shift times. You might want to do this at several different places and chose the pharmacist you like best, even if it means changing where you do business.

The same applies to anyone who works with your loved one—physical, speech, or occupational therapists for instance, or health aides—and yes, doctors too. In each case, make your questions specific to the service your candidate will be providing. For instance, you would ask a drug question of a pharmacist and perhaps a question about fluctuating abilities of a physical therapist.

Although you may only need your pharmacist to be Lewy-savvy, you need more for those who have more interaction with you and your loved one. They also need to be teachable team players. In fact, for many of those who provide a special service, such as a speech therapist, these last two are the most important. Even if they don’t start out being Lewy-savvy, their willingness to work with and learn from you will make them so eventually.

A team player sees you as an important part of the team. They ask questions about your particular situation and listen carefully to what you have to say. They ask your opinion and include you in final decisions.

Being teachable does not necessarily mean that a person takes what you share about LBD at face value. However, they should be willing to listen, ask questions and do their own research to validate your information. On the other hand, you should be viewed as the expert on your loved one’s unique way of doing LBD—what works for them and what doesn’t.

Doctors, neurologists and other specialists need to have all three of these aspects. They need to be Lewy-savvy, teachable AND team players. However, you can do much of your search for a doctor before you ever meet them. Using word of mouth is often a good way to begin the search. Ask other LBD caregivers who they use and how they like them. If you don’t know of any other caregivers, ask on the LBDA forums or the LBD Caregiver Yahoo groups. (see blog). Also ask for Lewy-savvy doctors and specialists at teaching hospitals and research facilities in your area. 

Once you have some names, make an appointment for an interview. Ask your questions and make your observations. Also, you need to be able to share information with the doctor without your loved one present. If this isn’t an option, Showtime (5/25 blog) will become an issue. Even if you decide this doctor isn’t for you, the cost of the visit is worthwhile, simply to “rule out” this one and move on to someone else. Good luck with your hunting.

Caregiver Care is Dementia Treatment Too

“Caregiving sneaked up on me,” Janet told her group. “LBD stole our relationship as best friends, lovers, and co-decision makers and left us with a caregiver-patient relationship neither of us wanted. He feels totally dependent on me and I feel overwhelmed and overworked. Don’t get me wrong. I still love Mark and want to care for him. But, if it weren’t for all of you, I’d feel so alone.”

Many LBD caregivers are in Janet’s shoes. Some don’t have a support group and so for them, it’s even worse. Caregiver stress is a very real part of the LBD picture. And remember, your loved ones reflect all of your feelings and so if you are stressed, they are too. Caregiver care is NOT a luxury. It is as much a part of your loved one’s treatment as the dementia drugs and good behavior management. Here are some steps to decrease your stress:

1.Early in your LBD journey, institute a “day out” for yourself. You may not feel the need for it yet, but the goal now is to get your loved one used to you going off for a few hours—and coming back refreshed. If you make this a part of your regular routine now, it will be easier for your loved one to accept later, when they are more dependent.

2. Find a support group. Any caregivers support group is helpful, but a dementia caregiver’s group is better and one specifically for LBD is best. You need a place to vent, to ask questions and find answers, and to know that you aren’t alone. Find an online LBD group too. They especially valuable if you don’t have a local LBD group and are great for 3am venting. Research has shown that caregivers who have a support group can keep their loved ones at home longer. I've listed some links to support groups at the end of this blog.

3. As your caregiving job gets more difficult, consider home health care. Again, this is NOT a luxury. It will extend the time you can keep your loved one at home and it is much less expensive than residential care. Not only does it take some of the physical load off your shoulders, it also gives you time to get out of the house and do something for yourself.

4. Hire a "housekeeper."  If your loved one is still able to care for himself but you are hesitant to leave him alone, consider hiring someone to do “housekeeping” for a few hours a week (or oftener) with the understanding that part of their job is to keep your loved one safe. This may be easier for your loved one to accept and it still makes it possible for you to get some respite, knowing your loved one is in good care.

5. Consider adult day care. If you are working, this may be a necessity unless you can find someone to come into your home. If you aren’t, it can give you a few hours of respite a day or a week. Again, start this as early in the LBD journey as you can so that it becomes a routine. Sometimes, staff will welcome early dementia patients as “volunteers.”

6. Consider residential placement without guilt. When, even with extra help, you are feeling stressed, it is time—probably past time—for residential placement. Again, this is not just for you. Nancy put it this way, “When I finally gave in and put Ed in a residential home, we got our marriage back. When I didn’t have to spend my energy and time on physical caregiving, I could be Ed’s wife and companion again.” Maria said, “I felt so guilty about having to put Gary into an assisted living program. But after a few months, I discovered that with adequate sleep and more self-care, I was a better person—and a better caregiver. I was more caring and patient with Gary. Now I wish I’d done it sooner.”
Links for LBD Caregiver Support Groups:    

Caregiver Support Group Links:
Local LBD Caregiver groups.  Also check with your local Alzheimer’s Chapter. Some have LBD specific support groups. We’ve been to two (Irvine, CA and Seattle, WA) and found them very Lewy-savvy and supportive.
Online groups:
 LBDA Forums (like online support groups for anyone, divided into topics)
Caring Spouses (spouses only)
LBD Caregivers (for anyone).

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!

Taming LBD

No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.

You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.

Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.

The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.

Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”

Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.

Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.

The Three A's: Assessment, Adaption and Acceptance

Being continually aware of how your loved one is doing—what triggers stress, what brings peace. Noticing the little things before they get big. Keeping your doctor’s appointment. Evaluating how the medication works—or doesn’t work. Keeping track of the behavior patterns, the cognitive levels, etc., etc. That’s the assessment part. You and the doctor need to know what you are dealing with and you are the one on the front lines. You do the first assessments—and if you are smart, you write it all down. Not only is a written record valuable to your doctor, it is to you too. You are a busy person and can’t be expected to remember every little thing. Some little thing that you document may be just what you need when you are trying to figure out what triggered your loved one to act out, for instance.

And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”

And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”

When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”

What more can I add?

Thank you, Lisa, for letting us use your insightful online support group entry.

Conversations in the Hot Tub

My inspiration for a blog didn’t come from a support group this time. This time it came at the end of a long, hot day of travel. We set up the motorhome, and swimsuits donned, went in search of the swimming pool and hot tub. There was another couple in the hot tub and we struck up a conversation. Turns out the couple was local and both had been working in supervisory positions in residential facilities for over ten years.

I shared that we taught about Lewy body dementia. “Hmm, is that Alzheimer’s related?” one asked. The other one just looked blank.  These weren’t uncaring people. They were professionals who appeared to enjoy their work and their patients. Yet, neither of them knew about LBD even though they likely work with people who have it every day. In fact, as we went on to describe the symptoms, they started nodding their heads. Yes, they could identify patients in their facilities that fit the descriptions. 

They told us about a man who would act out every so often and become so combative that they’d have to send him to the ER.  They obviously didn’t understand how to use behavior management to avert these outbursts—or even to look for triggers. And a lady had syncope—she’d pass out and nothing could revive her until she came out of her “coma” and began acting “just fine” again, and other similar stories. 

In the process of our fairly short conversation, it became apparent to us that these professionals weren’t aware of how dangerous some drugs were for these patients, or how upsetting stress was, or even how stressful some common place things like too much excitement or light can be. Our hot tub conversation brought back the question I blogged about a while back: “Where’s the rage?” And this time, I was feeling that rage. Why is it that the very people who are responsible for our most debilitated loved ones don’t know or understand this not so rare disorder? Why aren’t they being taught?

I know, I know. Be patient. It’s still a “young disorder.” But it’s still frustrating. For now, I just hope that our discussion caused them to do some research and learn more about this disorder that they deal with on a daily basis.

PDD: Fighting the Odds

A recent study found that over 65% of Parkinson’s patients age 70 and older will have begun to develop Lewy body dementia, the type called “Parkinson’s disease with dementia (PDD). That's the bad news. The good news is that there are many things that PD families can do to fight those odds—to extend the years prior to its appearance and to decrease its effect even after it does show up.

1.      Accept that dementia is a likely PD symptom—sometime. Understandably, acceptance may be difficult. However, without it, you aren’t going to succeed with the other steps. You can't fight something you don't believe is an issue.

2.      Maintain a healthy life style. Stay physically, mentally and socially active and being proactive about what you eat. This is true anyone who wants to avoid any kind of dementia. (That’s all of us, right?)  You can find information about this in many places. Several books in our Book Corner discuss the importance of a healthy lifestyle, as do articles on the LBDA and Alzheimer's Assn websites. Or just google "avoiding dementia" on the internet.

3.      Be alert for drug sensitivities. The ones of most concern are inhaled anesthetics and behavior management drugs. There is a very thorough review of this problem in our book, and it should be required reading for every PD family. Be sure you know the risks before you agree to major surgery. Behavior problems related to LBD can show up long before any noticeable signs of dementia and the drugs often used to treat acting-out are among the most dangerous for a PDD patient. In fact, as LBD encroaches, drug sensitivities in general can increase and so be careful with all drugs. Start with a much lower than normal dose of, for instance, an over-the-counter cold medication or headache remedy, and work up until you get the benefit you want—or side effects you don’t.

4.      Do all you can to decrease stress. For some reason, LBD increases with stress. Identify those areas in your life that are stressful and work with your family and friends to make them less stressful. For instance, if you have communication difficulties, consider a relationship counselor so that you can smooth things out.  If your job is stressful, can you change jobs—or even retire? Reduce clutter in your home. Check light levels-many PD and LBD people are light sensitive. There are many more ways to reduce stress. Some are mentioned in our book, some in Pat Snyder’s book, others you will think of as you go along.

If you maintain a healthy lifestyle, are very careful about the drugs you use, and work diligently to keep stress levels low, you can extend the “good years” for a long time.

On the Road for LBD

We are getting ready to leave our (VERY) sunny state of Arizona and head north to Washington. On July 25^th, we have the honor of sharing the stage at an event in Seattle with Dr. James Leverenz, the Chair of the LBDA’s Scientific Advisory Board and a leader in the dementia field. If you are also in the area, do show up and let us know you read our blog! (Details) This summer we will also be in California, Oregon and other parts of Washington if you know of any group that would like to have us speak.

We’ve started reading as we travel—Jim drives; I read out loud. So far we’ve read Treasures in the Darkness by Pat Snyder, Going Mad by Carol Pendergrass and are in the middle of Thirteen Years and Thirteen Dumpsters by Joy Walker. All are good reading and all have value for the LBD caregiver. Treasures has some great suggestions for preparing for that long journey—like house renovations so that you can keep your loved one home longer and reducing stress. Going Mad reminds us that getting the legal work done early on is a necessity—if you don’t, someone one else may! And Thirteen Dumpsters, which tells the story from an adult child’s view, encouraged me to view my own clutter with a more discerning eye—what can I do to make the inevitable clean up job, both physical and emotional, easier for my children?

Another book just out is Relentless Goodbye, by LBDA blogger Ginny Burkholder, is the story of her journey with her husband, Nelson. We met the Burkholders in 2005—a lovely, interesting couple. I’m sure Ginny’s book will be every bit as interesting. We don’t have Ginny's book in our LBD Book Corner yet, but you can still buy it through our website by clicking on the Amazon search box at the top of the page.

Drug Sensitivities--and More

As usual, when I attend a support group, I come away blessed with new ideas. Marla told how her husband, Bill, had severe nosebleeds. The ER staff couldn’t find anything wrong…nothing to cauterize… They sent him home, but the bleeds continued. It was the weekend and she couldn’t reach his doctor. Desperate, she looked for solutions. Could it be something he’s taking? Well, there’s aspirin and Plavix, both blood thinners. Why they would be causing trouble now, after 8-10 years of use, Marla couldn’t imagine. But she couldn’t find anything else to blame, and so she first stopped the aspirin; the nose bleeds continued. Then she stopped his Plavix. And viola!  No more nosebleeds!

“Why now?” she asked, voicing the question she’d had at the time. We explored the idea that Bill’s advancing LBD was the culprit, increasing his sensitivity to the Plavix, so that his usual dose became an overdose, thinning his blood far too much—thus the nose bleeds.

In our book I tell the story of my sister who had Parkinson’s and terminal cancer. She had a lot of pain. The hospice nurse gave her a small dose of morphine but she had scary hallucinations. Finally, when we cut the tiny pill into fourths, the hallucinations didn’t show up—but neither did the pain. Just that tiny amount did the job.

As LBD caregivers, we learn early to be alert for drug sensitivities—especially those behavior management drugs the ER likes to use. But we forget that there may be other sensitivities too. Most LBD folks spend a lot of time with their eyes closed or hidden by dark sunglasses to avoid a light that might not seem bright to us but is to them. Or, have you noticed that your loved one seems touchier? Their skin might be much more sensitive. Has their taste in music changed? Is loud music less attractive than it used to be?

“Oh,” said Marla, after we’d talked about this. “What about hot peppers? Bill used to love them—the hotter the better!--but he doesn’t like them anymore.” What used to be a fun “kick,” his overly sensitive body now finds just too painful to enjoy.

There is a small up-side to this. Since we are talking about a sensitivity, not an allergy, there might be medications that you thought were on the “no, no” list that you could use if you made the dose small enough. Like my sister’s morphine, a quarter of an allergy pill might do the job without harm. Of course, you’d only want to try this with drugs where there isn’t likely to be any permanent damage. And you should check with the doctor first, too!

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.

Where's the Rage?

“Where’s the rage? Why is the medical community so unaware aware all of those LBD drug issues? Why do I have to be the one who stands against the system and demand the care my wife needs? What happens to those who don’t have someone as assertive—and knowledgeable—as I am to stand up for them? Why don’t the professionals KNOW? They are supposed to be the ones with the training.”

Bill came up to me after our presentation, asking these questions—obviously feeling the rage himself and wanting to know why it wasn’t endemic. Actually, medical personnel ARE better trained than they were ten years ago. In 2002, most primary physicians had not even heard of LBD. Now they usually know about it although they may not be able to identify it or may still believe that since “all dementias are treated alike”, it is not necessary to know just what kind you have.

Spreading the word about any new disease is a long, painful process. I read somewhere that it takes 20 years for a disease to become known to the general public—and, I suspect, to be more than mentioned off-handedly in medical schools. LBD was only identified as a disease in 1996. That means it still has at least four years of relative invisibility. Often more.

I mentioned this to Bill. “But Lewy bodies have been known for many years,” he returned. Yes, since 1912, but then, only as something that was present with Parkinson’s disease. Japan’s Dr. Kosaka finally connected Lewy bodies with dementia in the mid 1980’s. But it was considered no more than a “rare disorder” until a group of specialists got together and agreed upon a set of diagnostic criteria in 1996.

In 2003, LBD awareness got another big boost. Jim Whitworth and four other caregivers founded the Lewy Body Dementia Assn. They felt Bill’s rage and wanted what he wanted—more awareness about LBD in the medical community and more support for LBD caregivers. The LBDA is almost nine years old now and it has become a strong national organization. Its efforts to advocate for awareness and caregiver support have had results, albeit, not always for the individual caregiver to see. 

In 2005, dementia and movement specialists agreed that dementia with Lewy bodies (DLB), which starts with dementia, and Parkinson’s disease with dementia (PDD) were closely related, with similar causes and cognitive symptoms. Lewy body dementia became an umbrella term for both. Until then, half of our LBD loved ones were not recognized as having those same drug issues. Research shows that drug sensitivities actually do get worse for the PD patient when dementia appears. Another step forward.

In 2008, our first book, Riding a Rollercoaster with Lewy Body Dementia came out, the first comprehensive, easy-to-read book about LBD. In it, caregivers often found the help they needed to take their concerns to the medical community. In 2010 A Caregiver's Guide to Lewy Body Dementia replaced this book.  We are honored to have this place in the history of LBD. We continue to teach, and, like Bill, our focus is on the medical community--especially the hands-on caregivers, the ones who care for our loved ones when we no longer can. If you want your caregivers to be more Lewy-savvy, refer their supervisors to us--we'd love to provide them with some training!  

Some of the latest advances have been in the area of earlier diagnosis. As of 2009, Mild Cognitive Impairment (MCI) has been divided into two types, amnesiac and non-amnesiac. The latter includes less—or no—memory loss along with the decline of executive functions (planning, organizing, etc.). However, it still doesn’t include impairment of social functions, i.e., the problems that delusions bring very early in the LBD journey. We still have a ways to go with this!

Most recently, in 2011, LBD became one of the 100+ Compassionate Allowance diseases, cutting application time for SSA claims down to as little as a few weeks—instead of the months, or even years that it was previously. This doesn’t change the medical community’s awareness of LBD’s problems, but it sure does help caregivers who are running out of funds.

Yes, Bill, things are changing. More people, more medical personnel, even primary physicians, are becoming aware of LBD, even if they still don’t really know how to identify it—or treat it. And yes, the progress is awfully slow—much slower than we’d like. We’ll have to keep on doing our own research and being strong advocates for our loved ones for a while yet. 

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.