Improving Communication

LBD can play havoc with verbal communication and yet the ability to communicate is important for our well being  with our without dementia.

• Language difficulties include the inability to find the right word or using the wrong word, often without even being aware of the substitution.
  
• Weakened facial muscles can cause a low, soft voice, even when the speaker believes he is almost shouting.
• Poor thinking skills. Slower thinking can take as long as 30 seconds to process a question and come up with an answer. Although this may seem like forever to you, your loved one is very busy processing and it does not seem long to them. Inaccurate interpretations are common and negatives may be missed, with directives such as “Don’t sit” seeming the same as “Sit.”
• Other issues may impede good communication: Poor hearing or vision, and depression or apathy decrease anyone’s ability to communicate well. Pain, infections or other illnesses all increase LBD symptoms and decrease language abilities.

Negative feelings, like frustration, confusion, low self-esteem, discouragement or inadequacy, are generated by poor communication. This adds stress, which increases LBD symptoms and makes communication even poorer, with social isolation a very real risk. Here are some ways you can improve communication and help your loved one stay socially connected, healthier and happier:

• Believe. If you believe that your loved one can still communicate, you will likely be successful—if you don’t, you probably won’t be. In support of belief, researchers have long said that comprehension is among the last abilities to go.
• Make the goal about being together, not about understanding or being right. If your loved one calls you Mary and your name is Janice, don’t correct the mistake. It will probably only embarrass or confuse which adds stress—and still poorer functioning.
• Eliminate distractions. Your loved one can focus on only one thing at a time. For a successful conversation, make sure their focus is on you.
• Listen carefully. Sit or stand closely and pay attention so that you can hear their soft voice. Make sure nothing is distracting you either.
• Be alert for non-verbal cues, often much more accurate than words. Check to see if you’ve guessed right: “Do you mean….?”  You can use visual cues too—pointing, touching, smiling, etc. can help your loved one to understand you better.
• Take your time. It takes at least 30 seconds for a person with dementia to process a response. That can seem very long but if you are patient, you may be surprised at what your loved one is able to give back to you.
• Talk normally, but slowly and distinctly. Don’t shout; dementia doesn’t cause deafness. (Shouting also makes you more difficult to understand.) Do talk slowly; remember the processing time issue. Also, talk clearly. Most of us are able to make educated guesses about words that are unclear. Your loved one may not be able to do that. Use positive directives: “Stand” not “Don’t sit.”  These are easier for your loved one to follow.
• Don’t interrupt. Let your loved one complete their response. Interrupting confuses. This includes finishing their sentences or trying to provide the right word. Only do this if asked, or if they have obviously come to a stopping point.
• Limit choices and ideas: Yes or no? This one or that one? Give only one instruction at a time and don’t change subjects.  To many choices or ideas at once overloads their processing ability, resulting in negative feelings, stress and increased symptoms.
• Use humor. This is relaxing and defuses negative feelings—for both of you. Laugh at your mistakes and help your loved one laugh at theirs.
• Check for other issues. How is your loved one’s hearing? Vision? Are they depressed? Apathetic? Are they ill in some other way? Maybe some of the problem isn’t dementia?
• Use touch and affection. When all else fails, this remains. Even when your loved one doesn’t know who you are, a loving touch, a gentle tone of voice and a caring smile are still communication they can understand.

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

When Families Don't Understand

No one wants their loved one to have dementia, let alone LBD. And it is still not uncommon for our family members to be unaware of its symptoms. Or, when told, to be sure they don’t pertain to THEIR loved one. The holiday season is often when distant relatives come to visit. This can be joyous—or sadly, not. Especially when the relatives doubt your word that Mom or Dad has a degenerative disorder. Betty, a surviving spouse tells her story of what happened with her daughter and son-in-law:

Darla and Joshua came to spend a week with us. I’d told them about my concerns, but they didn’t want to hear it. They made excuses for Hal’s behavior—They thought the doctor had it wrong. They thought I was over-reacting.

“Not dad,” Darla said. “He’s just a little slow—it’s just the PD.”
“Maybe he thought he was being attacked and that's why he hit out,” Joshua said after a he saw his father-in-law bat at the dog for no apparent reason.

It was frustrating but I understood. It had taken us a while too. When the doctor told us that Hal was starting to have dementia symptoms, we were shocked. We attended the PD support group in our city but no one ever mentioned dementia.

I explained it all to the kids but they weren’t convinced until the day Darla and I went shopping and left Hal with Johsua. When we returned, Josh met us at the door, almost hysterical. “You know what Dad did?” he hissed. “I left him for just a minute—just a minute, mind you!—to go to the bathroom. I told him I would be right back. Actually, I didn’t think he could get out of his easy chair without help but I made him promise he wouldn’t anyway. I had barely made it to the bathroom when I heard a thump and there was Dad down on the floor in the hall.”

“Welcome to my world,” I told Joshua. After that they began to listen to me—and believe me. I can’t tell you what a relief that was. It was as if I didn’t have to bear this burden alone.

Betty was fortunate. Grant and his wife weren’t so lucky. His stepchildren also refused to believe their mom could have dementia. “You are over-medicating her,” they insisted and went to court, got custody of her, took her off all of his medications and put her in a nursing home—where the staff kept her calm with psychiatric drugs. Months later, with the help of his brother, an attorney, Grant got his wife back but she was never the same—her level of functioning had plummeted.

Two very different stories but in both cases, the people who had less contact with Lewy didn’t believe it was there. The way they react depends on family dynamics, with blended families often being less supportive. This is too bad because it is their loved one that suffers, their loved one that becomes worse because of the stress that family strife, change and inappropriate medication inflicts. What can you do to keep this from happening in your family?

• Have a Durable Power of Attorney and a Medical Power of Attorney. Many couples prepare these for each other while both are still well, so that if one of them becomes unable to care for themselves, the other can step right up.  In fact, as early in the progress of the disorder as possible, it is a good idea to visit an Elder Care Attorney, one who specializes in what legal steps need to be taken for someone with a progressive disorder like LBD.

• Keep a journal or start a blog. Some physicians encourage you to send them a daily or weekly email. This is great documentation, supported by the doctor involved. Even if that isn't an option, you can still take it with you to your visits. A part of each visit should be with you alone so that you can discuss what’s in your journal and get important entries into the doctor’s notes. Keep family members informed by emailing them portions of your daily journal entry. (You will want to use your journal for venting too, and you might not want to share that!) Seeing what goes on day by day, can be an eye opener. Or start a blog. It provides an ongoing record of your Lewy journey that your family can visit at any time. Some caregivers have used audio recordings or videos. With the phone cameras we have today, this can be fairly easy to do, and can be quite effective.

• Keep close track of  medications. "Over- or under-medication” is a common charge. PD drugs can cause or increase dementia symptoms and so you need to show that you are working with the physician to keep the drugs balanced. Record everything including the date you fill a prescription and how many pills are in the bottle. Then record the times and dosage each time your loved one is medicated. Adding any unusual results will make this valuable for the doctor as well.

• Develop loving, trusting relationships with family members. Of course, this starts very early and depending on the situation may or may not be possible but it is always worth striving for. Since money is often involved, teaching your children to value family and relationships over more material things will help to build trust--which every caregiver needs.

ADHD and Lewy Body Dementia

Both attention deficit, or inattention, and impulsive behaviors are common early LBD symptoms although until other symptoms show up, LBD is seldom suspected. Nevertheless, these symptoms may be stronger risk factors for LBD than previously thought.

Inattention and impulsivity are also symptoms of attention-deficit/hyperactivity disorder (ADHD), which starts in childhood, usually between age three to five, and can continue into adulthood. Unlike Lewy, it is often genetic, being passed on from parent to child. However, there are many similarities between ADHD and LBD. Like Lewy, it occurs most often in males. Inattention causes a child to have difficulty completing a task, following instructions, staying organized and processing information, similar to the way the same problem affects adults with LBD later in life.

Impulsivity leads to behavioral issues and a lack of emotional restraint. Again, this is similar to the behavioral and emotional issues of LBD. Tests of people with Parkinson’s also show higher than average levels of inattention. Researchers suggest that the reason for these similarities is that people with Lewy body disorders and ADHD all have low amounts of certain chemicals (neurotransmitters) that brain cells require for proper functioning, although the chemicals vary with the disorder.

Even more interesting, a recent study found that those with adult ADHD (AADHD), people whose attention deficit and hyperactivity continues past childhood, were three times more likely to develop LBD than someone without the disorder. Further, people with adult AADHD were no more likely than the general public to develop Alzheimer’s. If substantiated with further studies, this could make AADHD as strong and as specific an indicator of eventual LBD as Active Dreams. (November 2, Active Dreams, PD and LBD) Thus, we suggest that anyone with AADHD start planning ways to avoid or delay its advancement into dementia. If it turns out that the risk of LBD isn’t so great, what you’ve done won’t be wasted. After all, most of what you do to delay dementia makes you healthier anyway.

Association of Parkinson's disease with symptoms of attention deficit hyperactivity disorder in childhood.

Adult ADHD Linked to Increased Risk for Lewy Body Dementia.

Caregivers Get Sick Too

This week, I have the flu. Yes, I had my flu shot but I’m still sick. Awfully sick. I’m spending more time in the bathroom than anywhere else. I’m afraid to get too far away for fear I won’t make it back in time. And I feel nauseous. Lying down helps, and so I’m spending a lot of time lolling around in bed, hoping I’ll feel better when I get up. And I usually do, for a little while. That’s when I do stuff like this.

But I can hang out in the bathroom. I can stay in bed. I can do as little or as much as I want. My husband is here; he picks up the slack. And so I am fortunate. If he had LBD and I was his caregiver, it would be very different. I wouldn’t have the freedom to be sick, to hide in the bathroom, to stay in bed. And if I did, who knows what would happen. And so, I’d be out there, trying to carry on. Any of you recognize that scenario? I’ll bet most of you have been there!

I’ve been thinking as I loll around in bed that caregivers need a backup plan. What do you do when you are too sick to care for your loved one? Do you soldier through anyway? I’ll bet a lot of you do. But you aren’t doing anyone any good. Here’s why:

• You can’t do a good job when your mind isn’t fully there—and when we are sick, you know it isn’t.

• When you aren’t fully present, your loved one senses it (remember they are very perceptive!) and feels deserted—and showing it by acting out in some way.

• If you don’t take care of yourself while your illness is minor, it can and often does get much worse. They you may find yourself in the hospital and unable to care for your loved one at all.

And so, what is your plan for when you get sick?

• When I was my sister’s caregiver, we had a respite caregiver who took over occasionally to give me a weekend away. We started early and so it was something my sister expected and accepted. If I’d been sick, I could have had her come in for that too. However, when I developed a bad cold, I did as most caregivers do—I struggled on. And I gave my sister my cold. I felt awful! Sometimes, it is no favor to “struggle on.”

• Do you have a place where you can “hide” and take care of your illness. If your home is large enough, maybe you can stay home, although the temptation to “help out” is always there if you do. But if your place is small, find a retreat. Stay at with a family member, a friend, or if necessary, a hotel. But not at home.

• Do you have access to any other type of respite care, such as hospice? That is a wonderful blessing. Get your loved one on hospice as soon as possible so that you have access to all of their wonderful services. (No, it doesn't mean they have to be very near death!--more about that in another blog...or check with the hospices in your community.)

• Do you have relatives or friends who will come in for a while, or several days? As I did, try to start using them early on, so your loved one is used to the occasional “change of guard”—and your volunteers grow used to the changes in your loved one too.

• Do you have any other ideas to share with our readers?

 Remember that taking care of yourself is one of the most important—and loving—things you can do for your loved one. Where would they be without you?

Apathy and Activities

Dementia caregivers know they need to find ways to keep their loved one’s brain working, ways to stimulate those still active brain cells and keep them functional as long as possible. Most of these ways require participation by the caregiver. One of the first things Lewy steals is initiative and motivation.

Harry explained, “Even before Edna lost much if her thinking ability, I noticed apathy; Edna’s “self-starter” was damaged. When I suggested something, she was glad to follow along and seemed to enjoy the trip as much as ever. But she never started anything herself, never asked to do anything.”

“That was a couple of years ago,” he continues. But the apathy remains. ‘Let’s do a puzzle,’ I’ll say to Edna. She’ll nod.  She doesn’t show much emotion—those days are over for the most part, but she will usually agree to do whatever I want her to do.” Once they start working on the puzzle, designed especially for people with dementia, Harry can tell that she’s enjoying herself. “She reaches for a piece,” he says, “tries it in a couple of spots and pats it several times when it finally fits.” True, she tires before the puzzle is done, but it will be there tomorrow for another challenge. (You can get puzzles like this on from our LBD Book Corner on our website.)

Janice sits with her mom every afternoon and asks about the photos in the family  album. “Do you remember this, Mom?” “What was happening here?” “Who is this?” They spend a few minutes each day with Mom reminiscing. Janice learns more about her family history while Mom exercises her brain. A win-win situation for both of them—but it probably wouldn’t happen if Janice didn’t make it happen. “Mom used to be such a take charge lady,” Janice said. “But not anymore. Now she would just sit and stare at the wall or her lap if I didn’t encourage her to do something.

Robin and her dad, Adam, spend time reading each day. Adam had been a teacher, and a voracious reader. Now, Robin explains, “Dad can’t read, hasn’t been able to for a while now. But he is very attentive when I read. He follows right along.” Robin has discovered an important aspect of LBD—comprehension usually remains intact after other skills slip and disappear. Even though Adam cannot read himself,  he can understand what Robin reads. This is why you need to be careful what you talk about in front of your loved one who is apparently incoherent, sleeping, or not paying attention. But it is also a way for some mutually enjoyable together time, “reading” something that both of you find interesting.

Caregiver and loved one spend many hours together every day. However, they are usually playing the nurse-patient game; like it or not--that is what is needed most as LBD takes its toll. Working on an abbreviated version of a once-loved hobby stimulates the brain. However, the biggest the reward for both participants may be the chance to do something together again as a team, even for a short time. 

Caregiver Guilt

November is National Caregiver Month—the time for all of you caregivers to be specially recognized. You make it possible for your loved one to stay at home, or if they are in a care facility, to continue to get the best care possible and to feel loved—no small thing, that. Wives make up many of these caregivers. This is one wife’s story.

When my husband developed LBD, I felt I’d failed. I didn’t know what it was that I’d done or not done to keep Richard from succumbing to this awful disorder, but I must have been at fault. After all, it was my job as wife and mother to keep my family well. And when Richard became so ill that we had to move him to a nursing home, I felt I’d failed again. Once he was sick, it was my job, as a good wife, to take care of him. And now, I’d passed that job to someone else. I was physically unable to care for him at home, but still, it was my fault somehow. I’d failed again. I was so filled with guilt that I could hardly bear to look at Richard.

I forced myself to go to my support group and I admitted my awful guilt. I expected them to agree with me, to say they felt guilt too. And then we could wallow in it together. Some did. But one wise soul called me on my “pity pot.” She told me, “You are using guilt to try to control the past. And it doesn’t work. It just makes things worse. Look at what it’s done to you.”

I hated to admit it, but she was right. I was a wreck. I couldn’t sleep, I was living on junk food and I was hiding, even from my husband who, I knew, still needed me. I couldn’t stop Richard from getting LBD, or later, keep him at home, and so I tried to control fate with my guilt. And it wasn’t working. I didn’t feel in control at all.

“Let it go,” she said. “You are still Richard’s wife, and his caregiver. But guilt keeps you from doing either of those well—if at all. Let it go and get on with your life.”

I did. Every time I started feeling guilty, I made myself stop. That’s when I realized that my job was far from done. Richard needed me every bit as much as he had when he was home. I was his security, his emotional support. I was the staff’s resource for what worked and what didn’t work for him. Now that I don’t carry a huge load of guilt and I’m not burdened with all the physical care, I can be Richard’s wife again. What a blessing that is—for both of us.

Getting Asleep and Staying Asleep

Support group member Amanda reported, “Leo was up and down all night long again last night. He was sure he was late for an appointment. I tried to tell him it was 3am, and besides he didn’t have an appointment today, but he still worried. He was up again in an hour, brushing his teeth. ‘We’re late,’ he told me again. I have to admit that by the fourth time we were up, I was getting testy. ‘Go back to bed,’ I told him a bit too sharply. That worked, finally. He got back in bed and pretty soon he was asleep again. I know how important getting a good night’s sleep is for him—for both of us really. I hate it when I lose my cool. I know it’s not his fault. Surely, there’s another way?”

This is a cry for help that we hear over and over. Sleeping pills aren’t the answer. They are among those that can cause irreparable damage for our LBD loved ones. Here are some safer suggestions:

During the day:

• Exercise: Most LBD caregivers know that “exercise is better than most dementia drugs” for maintaining cognitive function. It is also better than most sleeping pills for fostering a good night’s sleep. However, make sure the exercise occurs 2 hours or more prior to bedtime.
• Keep active: Anyone sleeps better if they have been active during the day. Even if movement is limited, stimulate with other activities, talking, hobbies, and such.
• Keep the peace: Anything that upsets your loved one during the day may come back to haunt you both at night. Do everything you can to maintain peace and lower stress. (See our August 31, 2012 blog on stress reduction for a start.)
• Eliminate time worries: Don’t tell your loved one about future plans. As dementia progresses, the concept of time is lost. Everything is in the here and now. And so when your loved one remembers that you said he has an appointment for day after tomorrow at 4pm, he feels he has to be there NOW.
• Bright lights: These help to maintain circadian rhythms. First, encourage exposure to as much natural daylight as possible. Take walks outside and get in some good exercise too! If that doesn’t seem to help, consider setting up a bright-light box, the kind used with seasonal affective disorder (SAD). Have it turn on automatically a few minutes before morning wakeup time and let it stay on for about a half hour. Follow up with exposure to natural light during the rest of the day.

Preparing for Bedtime:

• Atmosphere: Make the bedroom calm, comfortable and dark. Have a soothing color scheme, darkened windows, a comfortable bed, good ventilation and a minimal number of blinking lights from clocks, radios and such.
• Keeping time: If your loved one still has a concept of time, a large clock that’s easy to see from bed may help to decrease excessive getting up. 
• The last few hours of the day: This should be the calmest time of the day. No stress, no excitement. If bathing is stressful, do it earlier in the day. Ask family and friends to refrain from calling at this time. If TV is part of your normal routine, find the most calming shows you can to watch. You can also find  many web pages that offer soothing content. Three are: a) Soothtube offers Youtube shows with a variety of content and soothing voices, b) Serenity Channel offers beautiful pictures and soothing music and c) PaulFromStokeUK offers beautiful music and photos scientifically designed for relaxation. He also has DVDs for sale.
• Routine: Set up a routine that includes a set bedtime, low stress, enjoyable activities, the usual bedtime preparation, soft music, etc. What you include depends on the individual and what they enjoy. Once the routine is set, try not to vary it.

Medications:

• Melatonin: This is a natural hormone that triggers wake and sleep cycles. It has been used for years as a fairly safe sleep aid, even with LBD except that it may increase depression—already a problem for our loved ones. However the depression will go away when the drug wears off and so it might be worth a try. Using bright light therapy may decrease the depressive side effects.
• Medication time change: Ask the doctor if your loved one’s medication times can be adjusted so that those that encourage wakefulness, such as Exelon and Aricept are given in the mornings and those that calm such as Seroquel are given in the evenings.

Website: http://lbdtools.com

Active Dreams, PD and LBD

REM Sleep Behavior Disorder (RBD) is sometimes called “Active Dreams” because people who have it physically act out their dreams in their sleep. There is a chemical switch in the brain that turns off mobility during dreams, allowing a more restful sleep. When the switch is damaged, a sleeping person may thrash their arms and legs around, talk out loud and become violent.

When the brains from people who had been diagnosed with RBD, or Active Dreams, were autopsied, researchers continually found Lewy bodies even when no other Lewy body disorder was present. Thus we consider the disorder a member of the Lewy body family, usually the first one to appear. Although RBD can occur alone, it can accompany Parkinson’s disease and both types of Lewy body dementia and may show up before any other Lewy body disorder. Active Dreams have long been considered a serious predictor of Dementia with Lewy Bodies (DLB). They are often the first precursor to appear, and can show up decades prior to dementia symptoms.

Recent studies have explored the relationships between RBD, PD and LBD further. They have found that there is at least a 65% chance that a person with Active Dreams will develop an alpha-synuclein-based disorder within an average of 11 years of an RBD diagnosis.  Alpha-synuclein is the protein that when damaged, can become Lewy bodies, which causes both PD and DLB. The other member of this group is Multiple System Atrophy (MSA) which affects the Autonomic Nervous System similar to the way LBD does. MSA does not belong to the Lewy Body family, but it is a close cousin, with its cause being another type of damaged alpha-synuclein protein. 

One of those studies found that Active Dreams developed prior to PD over half the time. Of this RBD first, then PD group, half also showed signs of Mild Cognitive Impairment (MCI) prior to their PD diagnosis. All of this RBD/MCI first, then PD group, all went on to develop dementia before the four year study ended. None of those with Active Dreams but no MCI at Parkinson’s diagnosis developed dementia before the end of the four years.

Thus, anyone who experienced Active Dreams prior to their PD diagnosis should be examined for MCI. If this is present, it is imperative for you to make plans for the future—while you still can. Dementia will likely follow soon. If MCI is not present, then dementia may wait many years to appear—if it ever does. However, be forewarned: you still need to plan ahead. People have been known to develop dementia 50 years after the onset of RBD. Therefore, this does not give you an “all clear.” It simply gives you hope of more years of dementia free living.

Fluctuating Cognition: A Setup or a Gift

Donna is fairly new to the LBD journey. Her husband, Albert, was diagnosed with mild Lewy body dementia a year ago. There was an initial disbelief over the diagnosis, but once she and Albert and their two grown daughters accepted that they were on this journey, it wasn’t so bad. In fact, Donna said, “It was really a little easier. Now I understood why Al had such a problem doing things he’d done for years, like putting away his clothes properly.”

But then, as it does with everyone eventually, Lewy got worse. Al began having delusions and accused Donna of stealing his money. When he got physical, Donna became frightened and called his doctor who admitted him to a psychiatric hospital. Not the best choice for someone with LBD, but at least they were apparently aware of Lewy’s drug issues and didn’t try to calm him with antipsychotic drugs.  And Donna was assured that Al, a veteran, was eligible for Long Term Care benefits. She applied immediately.

Two weeks later, Donna was pleased to hear that her application was “one step away from acceptance.” By then, Al’s delusions had stopped and he began campaigning to go home.  Since he seemed to be his old, mild self, the doctor complied after a few days. Donna was ecstatic! “He’s so much better—why, we even uh, did it, last night. That’s not happened for so long it’s a wonder I remembered how!”

And then, Al was delusional again. This time he thought Donna was a nurse in bed with him—but still after his money. This is when Donna showed up at a local support group, devastated. She told the members, “I thought he was well. But now, he’s just as bad as he ever was—No, he’s worse. He didn’t even know me!”

Fluctuating cognition (see our May 25 blog) can be a terrible setup for the new LBD caregiver like Donna. If you believe, like Donna did, that the Lewy rollercoaster isn’t going to go back down, that the “recovery” is going to be permanent, you will be horribly disappointed when your loved one starts acting out again. The more experienced LBD caregiver accepts the gift and enjoys this “time out” with her loved one, making the most of it while it lasts. But she knows it is temporary and although of course, she’s sorry to see this time of awareness end, she isn’t surprised.

The story doesn’t end there. Al went back into the hospital but now Donna was told that he was no longer eligible for VA long term care benefits…he had recovered and didn’t qualify anymore. She’d have to reapply! Again, the people who needed to know—the doctor, the facility, even the VA—weren’t aware of Lewy’s fluctuations.  

October is Lewy Awareness month. It’s almost over for another year, but the need continues. The list of people who need to know is long…family members, doctors, nurses, hospices, VA officials, and many more. We need to extend Lewy Awareness to all year long, not just for one month. And we need to focus on things like cognitive fluctuations as well as the drug problems which, although very serious, are not the only way that our loved ones get short changed or even damaged by lack of knowledge in the medical community. 

Maybe It Isn't Dementia!

People are becoming more concerned about their cognitive health, and that’s good. As our population becomes more elderly, and as we become more exposed to the many toxins of our industrialized communities, dementia is becoming endemic. We should be concerned. However, let’s not over react.  Before you become concerned that you or your loved one has LBD or another non-curable dementia, have it checked out. It could be something as simple as dehydration!

Dehydration. When 80 year old Alice became disoriented, her concerned daughter took her to the doctor, who told Alice she needed to drink more water. With her daughter’s continual encouragement and monitoring, Alice did—and the dementia went away.  Even if dementia is already present, dehydration can make it worse. John’s PDD made him too shaky to handle a cup easily and made swallowing difficult. When these problems were dealt with so that he could get more fluids into his system, his dementia decreased.

 Brain tumors. Some brain tumors can cause dementia symptoms. Often surgery can reverse this. This is why you don’t say, “Oh, well, I’m just getting old and some forgetfulness, etc. is to be expected. If you are feeling like you are having cognitive losses, have it checked out!

Malnutrition. Dr. Rosenthal of Buffalo, NY, reports that 30% of the people who present in his clinic for cognitive impairment show signs of malnourishment.  If the body is so undernourished that it can’t function properly, the brain suffers as well.  A good healthy diet can reverse dementia caused by malnutrition—and slow progressive dementias as well.

Depression. Rob, newly retired from his job of 30 years, felt depressed. His wife, Jody, noticed that his thinking wasn’t as clear and his attention span had greatly decreased. His father had LBD and she was afraid that Rob was developing dementia as well. She convinced him to see his doctor who prescribed therapy to help him over his situational depression. As he began to adapt to his retirement, Rob’s depression lifted and his cognition improved greatly. Jody’s concern was valid. Depression is a major symptom of MCI, especially the type that precedes LBD. However, it is also the greatest cause of curable cognitive impairment.  And so be proactive and find out if this is something that can be treated by life style changes, therapy, drugs or even diet.

Drugs. Anyone dealing with LBD knows how dangerous drugs can be for our loved ones.  However, even if you aren’t at danger for LBD, drugs can decrease things like reaction time, attention and memory. (Think of all those medications with warning not to drive while taking them.)  Remove or change the drugs and the cognition will likely improve.

The bottom line is that when you notice cognitive losses, have them checked out. Don’t just assume it is part of the aging process—or even that you actually are having early symptoms of dementia but there’s nothing you can do to change that.  Some cognitive impairment is reversible. And when it isn’t, when it really is a forerunner of dementia, you can usually slow it down.

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. 

Mild Cognitive Impairment - Lewy Body (MCI-LB)

Until recently, a person had to be experiencing some sort of memory loss to be diagnosed with Mild Cognitive Impairment (MCI). However, in the last few years a new type of MCI has been identified—one that LBD families were quite familiar with. In MCI-LB, the basic definition remains the same: cognitive losses not severe enough to significantly interfere with functional ability or activities of daily living. However, the cognitive losses are “non-amnestic,” that is, they involve cognitive functions other than memory.

Dementia usually starts as mild cognitive impairment and increases very slowly. MCI-LB can occur by itself, or with other non-cognitive symptoms that also warn of eventual LBD.  Very little is known of how MCI precedes DLB, but much is being learned about how it occurs with PD. Here are some statistics:

• Mild cognitive impairment occurs in about 25% of newly diagnosed PD patient.
• The risk for dementia increases when MCI is present at or near PD diagnosis.
• The risk for dementia increases even more when other risk factors are also present at or near a PD diagnosis.

A person may have only one of the following symptoms (single domain) or several (multiple domain) or even all of them. However, to be defined as MCI, there must be some loss of executive function or memory. The John Hopkins Health Alerts listed these symptoms for non-amnestic MCI:

•    Executive function. These include difficulties with problem-solving, initiating and planning, multitasking, impulse control, following through and monitoring performance.

•    Memory. Memory retrieval may become difficult. This may include tasks learned long ago—playing the piano, using electrical equipment, driving or even brushing one’s teeth. Learning new information is still possible with adequate repetition.

•    Mental processing. Mental processes slow down the ability to process and respond to information. This has a domino effect that can impair other cognitive abilities, including problem-solving and memory retrieval.

•    Language. Finding the proper word to use becomes difficult (it’s on the tip of my tongue syndrome). 

•   Multitasking. Understanding and processing complex information becomes difficult. Being presented with more than one idea or choice at a time or needing to perform sequential tasks may become frustrating and stressful.

•    Attention. Maintaining focus or doing more than one thing at a time becomes difficult.

•    Visual-spatial abilities. Perceiving, processing and acting on visual information becomes difficult. This impairs driving, reaching or walking.

We are well aware that the most bothersome symptoms of MCI-LB are usually non-cognitive—things like hallucinations and even delusions. We plan to discuss them in a later blog.

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.  

Residential Placement--Without Guilt

Twin issues make it likely that eventually most LBD caregivers will need to consider placing their loved one in a residential facility. First, LBD is a progressive disease. No matter how dedicated you work to reduce stress and do other things to keep the symptoms mild and the acting-out minimal, it WILL get worse, with acting-out being the norm rather than not. Mobility may decrease as well. 

The second issue is your own health. Statistically, dementia caregivers are at high risk for illness and other health issues such as bad backs. LBD caregivers are at even higher risk. Either of these or, often, the two together can make the need for residential care a reality. Here are some areas of concern:

1.      Promises. The ideal way to prepare for this eventually is to start the planning early in your LBD journey while your loved one can still participate. But even if you don’t do that, be careful not to make promises you can’t keep. In our book, we talk about how Jim promised Annie he’d keep her at home. When he couldn’t keep his promise, Annie never forgave him. With AD, she might not have remembered the promise, or even Jim. But Annie had LBD, and she did remember. And so if you do make such promises, be sure to ALWAYS add, “as long as it is safe.”

2.       Stimuli. When looking for the ideal home, remember that your loved one is extremely sensitive to almost any kind of stimuli—too many people, bright lights, too much activity, etc.  Joy Walker, in her book, Three Years and Thirteen Dumpsters, tells of how she thought she’d chosen a wonderful place with caring staff for her father. But it was too big—too many people were coming and going, too much was happening and it overwhelmed her father and caused him to act out. When she moved him to a smaller home, with only a few residents, he did much better.

3.      Location. The closer the place is to your home, the more you will be able to have quality time with your loved one. You will be able to be there for shorter periods at all times of the day instead of just staying there for hours even if he is asleep and missing other times when he is awake. Also the more you will be able to take care of your own needs. For instance, you will be able to slip home for a couple of hours for a reviving nap, or take those hours to go out to lunch with friends.

4.      Drugs. Know the facility’s policy about drugs. You want to know that those drugs that are unsafe for your loved one will not be used and that the staff is trained in ways to use environment, behavior management and stress reduction to decrease symptoms before resorting to drugs.

5.      Interviews. Make visits, maybe even take your loved one there for a meal. Tour the facility. Interview staff. Our book includes things to look for and questions to ask. You can also find many other question lists on the internet at sites like Cargiver.org.

6.      Guilt. Many caregivers feel guilty when they can no longer care for their loved one at home. Don’t. Let the guilt go and move on. You are still the most important person in your loved one’s life. It’s just that your job description is changing. You may no longer provide physical care, but you are still your loved one’s emotional support and main source of stability. Besides, your guilt becomes stress for your loved one, like any other negative feeling they pick up and internalize.

By the way, expect to discover that after a few months, you will feel that you are an even better caregiver for your loved one. Now you have the energy to give quality time. Now, your health is better and you can focus on more than just making it through one more day. Now you can enjoy your loved one, and he you. Nancy put it this way, “When Del was at home, I was the caregiver and he was my patient. That’s all we had the energy for. Now, with Del in a facility, I got my marriage back. Someone else does the hard, time-consuming physical stuff and I can go back to being a wife, where being supportive and loving is my major focus.

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’s Guide for Only $3.99—And Writing Reviews

It’s true. Amazon is selling the Kindle version of A Caregiver’s Guide to Lewy Body Dementia for only $3.99. Amazon plays with their prices a lot. Although until now, the Kindle version has remained at $9.99, the paperback version has gone from a high of $13.98 to a low of $13.23, but so far, the price has always returned eventually to its norm of $13.57. And so, I don’t know how long this especially low Kindle price will last—maybe a day or a week, or maybe it is even the new base amount. Buy one for yourself or buy some as gifts for family and friends. Also, if your loved one is in a residential facility or if you have a home health aide, this is a great but inexpensive way to share information about LBD.

We’ve added the Kindle version of our book to our LBD BookCorner Store to make it easy for you to buy. Just click here. While you are there, take the time to check out the other LBD related books that we’ve gathered together for you. If there’s a book you’ve been wanting to buy but haven’t yet, check the price again. Remember, Amazon plays with their prices and you just might find a bargain!

And while I’m talking about books, do you write reviews for the ones you read? Please do. You don’t even have to have bought the book on Amazon, although they do show if you did or not. As a buyer, not only of books but of other items as well, I’ve come to depend on consumer reviews and read them carefully before I make a purchase.

They really do help a person chose the right book and all it takes is a little thought and time. Think about what you liked/disliked over all and then add some specifics—I especially liked/disliked the way the author talked about….”.  If you are still unsure what to write, read some other reviews to get an idea of what people write.

As authors, we value every review. What we learn about your likes and dislikes has an effect on everything we write. Thank you to everyone who reviewed our book, and to those who reviewed other books as well. When choosing books for the LBD Book Corner, we always take your reviews into consideration..

And finally, if you know of a book or activity you like and we don't show it, do let me know! Happy reading and gifting.

Alcohol and Lewy

Judy asks, “Matt loves his after-dinner drink of wine. Is there any problem if that’s all he has?"

Maybe not. It might even be good for him. In the last decade, many studies have shown a positive association between moderate alcohol consumption, especially wine, and reduced risk of dementia and better cognitive function. And any negative results will be temporary and so, once Judy knows what to look for, allowing Matt a single glass of wine might be just fine. But first, let’s look at a few facts about alcohol and the normal, healthy body during sleep.

Normal sleep occurs in cycles of 75% deep sleep and 25% lighter, REM sleep, which is when dreams occur. Each cycle takes about 90 minutes and so you may have several dreams each night but no one dream lasts very long.

Let’s say that Brian, a man with no health problems, has a couple of after-dinner drinks while he watches TV. He says it relaxes him helps him fall sleep easier. Alcohol is a sedative and so it probably does.It will also cause him to sleep more deeply with fewer dreams—for the first half of the night. Then, however, he is likely to be sleep poorly for the rest of the night.

That’s because the body is all about balance. Brian’s drinks lower the functioning of his whole system—blood pressure, everything.  In an effort to compensate, his body secretes chemicals that direct its organs to work harder. Two to four hours into the night, the effects of the alcohol will be gone but the last of his body’s chemicals, secreted while there was still some alcohol in the system, will still be circulating, causing a rebound effect. Brian will be more restless and may find himself waking up. 

Studies have shown that a moderate dose of alcohol (2 glasses of wine) consumed even several hours before bedtime can increase wakefulness during the second half of the night. Further, in an effort to restore the ratio of deep sleep to REM sleep, Brian’s whole night’s quota of dreams will now be crowded into the last half of the night, resulting in more restlessness, and even nightmares.

Now, let’s add Matt’s LBD. First, LBD already slows everything down and so the alcohol has a greater effect. Therefore, Matt may respond to his single drink as though it were much more—putting him in at least, the “moderate drink” category. Next, it may take Matt a longer time to metabolize the drink. Thus, even though he has his drink earlier in the day, it may still have a similar nighttime sedation/rebound effect.

And then, there’s alcohol’s effect on RBD—active dreams. Matt already has active dreams now and then. But with all of his REM sleep crowded into the last half of his night, his active dreams will be longer and probably more disturbing. Nightmares were reported in the literature for people without RBD—certainly, we might expect the same or worse for Matt.

However, all of these effects are temporary. They last only as long as the chemicals do. And so, first Judy and Matt need to do some research.  Go ahead—have the drink. Then Judy needs to watch Matt’s sleep pattern carefully. Is there more restlessness during the last part of the night than during the first part? Is it serious enough to worry about? If not, they are home free. Of course, LBD is a constantly changing disorder and so Judy should continue to be alert for increased wakefulness or increased active dreams.

If Judy does see evidence of a rebound effect, all is not lost. Try the drink earlier in the day and see what happens. If there is still restlessness, consider a wine spitzer, with half, or even less alcohol. Again, first after dinner and then, earlier in the day. If that doesn’t work, consider warm milk or herbal tea, or my personal favorite, a cup of nice hot water.

Go to the links shown in this blog for more information on this subject.  Reminder: We are not doctors and cannot make specific recommendations. We offer our own opinions based on caregiver experiences and information gleaned from current literature. You should consult a physician for your specific issues.

Comments Please!

This week, I’m using our blog to make a request. We’d really like to hear from our readers. We’ve been doing this blog for a year now. I write, but Jim does his usual suggestions/quality control bit and so it’s his too. 

Since we started posting weekly in March, our readership has grown to over 500 views last month. Thanks to everyone who has checked us out and especially to those who return again and again. But we still aren’t getting many comments and that’s what makes a blog like this so much better.

Do you agree with our thoughts – or not? Do you have a story to add? Is there something you’d like us to write about? To avoid spam, the blog is set up so that I review each comment before it is published. Unless the comment is really out of order, I will of course, publish what you write. We want a give and take here. However, because I do review first, you can make a private comment. Just let me know it is private and I’ll respond without publishing anything.

And while I’m at it, have you checked out our LBD Book Corner? If you have, did you find any books you liked? Do you like being able to find so many LBD-related books in one place? Do you know of any books that aren’t there but should be? Did you check out the Activities page? Is there anything else you’d like to see us add? Again, we would really appreciate your feedback.

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.