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.

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.

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.

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.

Delusions of Unfaithfulness

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

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

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

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

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

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

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

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

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