The Many Faces of LBD, Revisited

Since we published this blog two years ago, all that has changed is some research that verifies what we said in the first place! However, many new readers likely haven't seen it and so here it is with updates.

Some say that if you put Alzheimer’s disease (AD), Parkinson’s disease (PD) and schizophrenia in a bag and shake them up, you’ll get Lewy body dementia (LBD). But that’s not all; add sleeping disorders and autonomic nervous system dysfunctions and you’ll be closer to describing this multifaceted disorder. However, today we’ll only talk about the first three and save the others for later.

LBD is similar to Alzheimer's, in that it is a loss of cognitive abilities. However, AD folks tend to lose memory skills first. They forget words and things. LBD folks lose executive skills first. They become unable to think, do sequential tasks, plan, or make decisions, judgments or choices. Even more important, LBD folks may have severe drug sensitivities to drugs that Alzheimers folks can usually take with comparative safety.

Concern: These two dementias often occur together. Since AD is most common, someone with both disorders will most likely be diagnosed first with Alzheimers. Thus LBD’s severe drug sensitivities may not be discovered until the damage is done.

Update: This is still true. Many family practitioners especially, view all dementias as very similar and see little need to burden their patients with the time, effort and money involved with a referral to a specialist. Insist on seeing a neurologist who specializes in dementia or a geriatric psychiatrist.

LBD is related to Parkinson's. There are two types of LBD. Like PD, both are caused by Lewy bodies in the brain. When dementia starts first, this is called Dementia with Lewy bodies (DLB). They may never have major mobility problems and are the ones most likely to be diagnosed with Alzheimer’s disease. People who develop PD first and then go on to develop dementia symptoms are said to have Parkinson’s disease with dementia (PDD).

Concern: Drugs that improve mobility decrease cognition. When a person has PD, they usually see a movement specialist who may view the dementia as an unavoidable symptom of advanced Parkinsons rather than a possible side effect of the PD drugs. When given a choice, caregivers will almost always chose cognition over mobility for their loved ones, even when it means more work for them. They may not get this choice with a movement specialist.

Update: PD specialists are much more aware of the dementia and drug sensitive issues than they were two years ago. For one thing new research is showing that mild cognitive impairment is actually present at PD diagnosis 25% of the time. Identifying this makes the need family oriented preventative care all the more important. Avoiding Lewy-dangerous drugs, managing stress and living a generally healthy lifestyle can greatly extend the time before dementia.

LBD is sometimes compared to schizophrenia because perceptual dysfunctions like hallucinations and delusions are so common and because they tend to very start early in the disease process. In fact they may be the first dementia symptoms, although they are seldom recognized as such until other more cognitive symptoms such as the loss of executive skills appear. One big difference is that people with schizophrenia often hear voices telling them what to do, while LBD hallucinations almost never include voices at all.

Concern: When acting-out behaviors start before more recognizable dementia symptoms, people may see a psychiatrist first. The behavior management drugs most used by psychiatrists are those most dangerous to LBD folks. Even one dose may cause serious, permanent motor or cognitive problems.

Update: Clinicians have now formally identified a type of LBD that starts with behavioral problems like hallucinations and delusions. Families with someone who begins to show such symptoms in their 50s or later should consider LBD even if no other symptoms are present.

The bottom line is that when any of the above symptoms are present, everyone involved should be aware that LBD could also be present, no matter what a person’s diagnosis. If you are wrong, no harm is done. If you are right, you may avoid the damage that can come with LBD’s drug sensitivities. You may also be able to identify “inappropriate behavior” that is alienating co-workers, family and friends as possible early LBD related acting-out behavior. Naturally, you should share your observations and concerns with your loved one’s physician and if appropriate, ask for a referral to a dementia specialist.

Update: The bottom line hasn’t changed.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

Chairs, Getting Out and Staying In

Getting Out. A person with a Lewy body disorder (PwLB), either Parkinsons or some form of LBD, may lose their ability to lift themselves out of a chair. This loss of mobility or of knowing how to perform the task, is part of the disorder. At first all that is needed is a little assist. Then it gradually gets more difficult and eventually the caregiver must do most of the work. A major problem is that in trying to help, your loved one does just the opposite, leaning  back and stiffening up instead of leaning forward. Here are some suggestions. You can buy the gait belt, shelf paper and chair wedge from Amazon via the LBD Book Corner.

Use a pillowcase. The job of helping a PwLB stand is easier if he scoots forward in the chair first. However, many people have difficulty doing this. Some just don’t have the strength. Others misinterpret the directions do the leaning back and stiffening up thing. Try putting a pillowcase under in the chair before your loved one sits down. Then, standing at the side of his chair, reach across your loved one’s lap, grab the pillowcase and pull forward. This will slide him forward on that side. Then go to the other side and repeat the process. You may have to do this a couple of times to get him far enough forward.

Use a soft gait belt with handles. You should never try to lift anyone from a chair by grabbing under their arms and pulling up. This puts too much strain on your back and damage the liftee’s shoulder and underarm. Instead, use a gait, or transfer, belt. This belt, fastened around your loved one’s middle provides support for them while giving you a place to pull up safely. However, these belts can be uncomfortable and the PwLB may resist wearing one. Soft gait belts are more comfortable. They also have handles that are easier to use than just the belt.

Use automatic gestures. If you ask your loved one to lean forward and he does the opposite, its his mind sending out the wrong directions to his muscles. Change tactics. Instead of telling him, “OK, lean forward and I’ll help you out of the chair,” stand up straight, reach out one hand as though you are going to shake hands with him, and say, “Come on, let’s go.” He’ll automatically lean forward and reach for your hand. Grab it, and use the movement he’s started to help him stand. The reason this works is because it is automatic. He doesn’t have to think about it. We have been trained since we were small to reach out and take a person’s hand when they offer it. When thinking gets muddy, automatic actions often work much better.

Use the right furniture. Make sure chairs are high enough to get out of easily and have firm armrests. Situate the chair in a place where you can stand at either side and don’t have to lift from the front.

Take care of your back. Second only to caregiver stress, back injuries are a major risk of caregiving. When lifting, always stand with your knees bent and your feet shoulder-width apart. Use the muscles in your legs to lift, not the ones in your back. Stand to one side and use your body as a fulcrum so that and let your loved one do as much of the lifting as he can. Work with a physical therapist to learn the best way to lift your loved one. There are basics techniques but each person is different.

Go slow. This is always important but it is especially important if the people trying to lift your loved one aren’t well known to him. Going at normal speed, let alone fast, may feel like an attack. In such a case, it is natural to stiffen up and try to cling to the chair. Ask the staff to take their time and tell your loved one what they plan to do. Visiting and joking with him a bit helps as well. Family caregivers may have to educate the staff about the best way to do this for their loved one. You may feel that you are paying for them to know this—and you are. However, it is better to teach them and then know that your loved one is getting the care he needs in the gentlest possible way than to refuse to help and see him frightened and resistant.

Staying In. Sometimes the problem is that your loved one slips out of the chair. Tying them in isn’t necessarily safe, for the restraints can actually strangle a person if they slip too far. Here are a couple of suggestions from other caregivers. The down side to both of these suggestions is that you won’t be able to use either of these methods for staying in place AND the pillowslip for lifting. It’s one or the other!

Us e shelf liner: Find some rubberize shelf liner, cut a square and place it in the seat of the chair. This liner is used to keep things from sliding in motorhomes and it will keep your loved one from sliding too.

Use a foam wedge: Buy a firm foam wedge about 2-3” on the high side. Place in the chair with the high side at the front. This extra height may keep your loved one from slipping down.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

A Caregiver's Guide to Lewy Body Dementia on Sale

Bulletin:

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Happy belated St. Patrick's Day!

Speaking about Taking Charge, Moving On and Enjoying Life

We had the honor of being invited to speak at Global Community Conference on Parkinson’s Disease: Beyond the Limits conference in Keystone, CO earlier this month. They had the usual keynote addresses and breakout sessions. The sessions fell under several headings. For example, Beyond Today was about research. Since the conference was being held in conjunction with a Keystone Dual Conference for Parkinson’s and Alzheimer’s, we had the benefit presentations from some of the world’s most renown researchers. In later blogs, we will discuss some of the research we learned about for it applies to LBD as well as PD.

Beyond the Pill was about non-medical treatment and Beyond the Worry was all about caregiving. In past blogs, we have already discussed non-medical treatment and I’m sure we’ll do more of that for it is the direction we see ourselves going in the next year. Sadly, the sessions about non-medical treatment we’d most like to have seen were at the same time as ours and so we didn’t learn a lot about that, at least not there.

We were in the series called Beyond the Tremors, i.e., non-motor symptoms. Besides ours, there were several other session on cognition, some taught by the above scientists. Addressing cognition so directly is a change for PD groups. They have traditionally avoided this subject or else, treated dementia as a symptom that PwPD occasionally developed towards the end of their lives.

However, we found that the old resistance of the PD community to see itself as a part of the Lewy body continuum was still there…a little less strong but still alive and well. Many had never heard of Lewy bodies, and if they had, were not aware that they caused PD as well as LBD. Of those who did know about Lewy bodies, fear was often present. One man who came to hear us put it this way, “I was afraid to attend your session. I was afraid you’d paint a dramatic picture of doom and gloom.” Another woman said, “When the doctor told me I had LBD, I felt I’d been given a life sentence.” We didn’t talk about doom and gloom or life sentences. We talked about hope and about taking charge, about a person’s power to slow down the disorder’s progress and increase one’s quality of life. The man who'd been afraid to come told us later, "I'm glad I came. It wasn't what I feared. Instead it was positive and helpful."

Yes, PD is a progressive disease that can and often does limit one’s thinking ability as well as one’s mobility. It is so easy to feel that the disorder has taken over and that neither the PwPD nor the caregiver is any longer in charge—to feel as though they are locked in a driverless train to death or worse, insanity. It’s scary, to say the least. We were there at that conference to tell families that they don’t have to feel so hopeless and helpless; that there are many things, from living a healthy, low-stress lifestyle to avoiding Lewy dangerous drugs, they can do. We talked about knowledge being power. The power, for instance to know which drugs are Lewy-safe and which may not be. You can’t stop that train, but you can slow it down so that you can enjoy the scenery and even the journey.

Our goal is to teach PD and LBD families not to let the disorder to take over but to “live until you die.” To take charge, move on and enjoy the life you have.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.
Parkinson’s disease

LBD and Communication 3: Methods of Communication

Past blogs have discussed the many communication difficulties a Lewy partner (the person with a Lewy body disorder) faces. As verbal communication becomes less effective, other types of communication take over. We sometimes forget that we use a variety of ways to get our messages across. Most of us think of communication as being mostly verbal. However, as the ability to communicate verbally decreases, other methods become more important.

A few weeks ago Kevin started yelling and trying to fight me. I couldn’t understand why he was so angry. He’s usually so mild-mannered and sweet. I didn’t know what to do, but I remembered that stress can mess with communication. I thought that if Kevin was this angry, then something very serious was going on with him. I thought it might be delusions. I’d heard a lot about how they can make a person act out. But he wasn’t making accusations. It was more like he was trying to fight me off. –Sarah

Although the message may be garbled and inaccurate, something was likely stressing Kevin. Some of his intensity might have come from the frustration that he wasn’t able to communicate well enough for Sarah to understand him. However, Kevin could also be just as angry over a small irritant as over a very painful one.

Kevin has a history of ulcers and so I asked him if his stomach hurt. He became very excited and tried to hit me. I almost called 911. This was getting dangerous. Then I remembered reading that sometimes touch will work when words won’t. And so I gently touched his stomach and asked him if it hurt there. He collapsed into a chair and nodded. I gave him some mild pain medication and he quieted down. In fact, he went to sleep. I called the doctor and got an emergency appointment for the same day. Kevin is now on medication for ulcers. –Sarah

Intensity, words, touch, tone of voice, body language and facial expressions all convey messages. Recognizing Kevin’s angry behavior as communication, Sarah tried to understand what his behavior meant. Before resorting to a medical solution, she thought it through and checked her conclusions by using touch instead of words.

Intensity. This reflects the amount of tension involved. The mode of communication may change but the intensity of the message may remain. It affects expressions, actions and voice tone. A low softly voiced “I love you” accompanied by a gentle touch and a loud “I love you” accompanied by a frown have totally different meanings. As a general rule, the louder, more energetic or negative an interaction, the more stress it suggests.

Intensity is not a constant for the Lewy partner. Without an ability to judge the severity, a Lewy partner either hurts or he doesn’t. He is either scared or he isn’t He is either angry or he isn’t. Although he will usually respond better to a low intensity communication, he may not be able to adjust his own intensity appropriately.

Verbal communication. Lewy symptoms impair verbal skills more than any other type of communication. Words are symbols we use to express our feelings and thoughts. We hear words and use our past knowledge to interpret what they mean. We respond internally with a feeling or thought, interpret that feeling into words, and reply.

When LBD damages a person’s thinking abilities, the interpretation steps often get missed or garbled. Words become either misunderstood or unavailable. Then when muscle problems make talking harder to do and understand, many Lewy partners choose to talk very little.

Next week’s blog will be about communicating via the senses.

Find more about LBD in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.