The Whitworths of Arizona, bringing science to you in everyday language.

Friday, February 15, 2019

What about Provigil?

(Some words are italicized the first time they appear. These are defined below this post.) 

Way back in 2008, we had a friend, Bob, whose father had LBD. Dad also had excessive daytime sleeping (EDS), a common LBD symptom. His doctor prescribed Provigil and it did keep Dad awake more. But Bob insisted that it made his dad more alert too. "It even stopped most of his hallucinations," Bob told us.

We knew that Provigil was a psycho-stimulant, a brain stimulating drug approved for use with EDS, and so it was an appropriate drug for Dad's excessive daytime sleeping. We also knew that college students have used it and other psycho-stimulants, like Ritalin and Adderall, to help them stay awake and cram for tests and so the idea that it improved Dad's cognition wasn't off the wall. Of course, this off-label (and often non-prescription!) use by healthy students is not encouraged. But might its use by someone like Bob's dad be very helpful for more than just EDS? Some people thought so, but there was little if any scientific proof.

Fast forward to 2017 and two articles, one about the generic Provigil, modafinil, and another about its close cousin, Nuvigil. In the first, researchers used MRI imaging of the brain to find out if and in what areas of the brain, modafinil caused increased activity. In the second, researchers explored the effectiveness, safety and tolerability of Nuvigil when used for EDS associated with dementia with Lewy bodies (DLB).

It is believed that Provigil and its close cousin, Nuvigil, both work by improving the function of dopamine. Dopamine in the midbrain acts to control mobility as any PD care partner knows. But in other parts of the brain, it facilitates cognitive functions. Researchers in the first study found that modafinil significantly increased activity in the areas of the brain controlling vision, attention, inhibition and the working memory.

This not only supports the theory about how Provigil works. It  shows how Provigil likely helped those those college students to focus better and have better access to the thinking skills that operate in their working memory. And it looked like Bob could be right in his claim that Provigil was the cause for the improvement of his dad's hallucinations and his better alertness. But did any of this last?

Probably not. The first study was done with only one dose per subject and so continuity was not an issue. However, the researchers in the second article did administer Nuvigil for various periods of time but they found no improvement in cognitive function. The critical term here is "over time." The college kids didn't get smarter over time either. Their skills were simply improved temporarily, long enough for them to get through their tests. Even without the other issues, that's a good reason to discourage this practice. For the student's learning to be useful in the future, it needs to last, not disappear after a quick short-term boost!

It is admittedly different for a person with dementia, where any boost, even short term, is welcome. However, its lack of improvement over time is likely why doctors seldom prescribe it off label to assist FDA approved dementia drugs. Of course, LBD is very individual. Maybe in Bob's dad's case, it did last longer.

But are these drugs safe? The researchers in the second article found that the drug was reasonably safe for people living DLB. Thus it is probably equally safe for someone living with PDD. Addiction is always a concern with any psycho-stimulant, but since Provigil and its relatives have a different action than most other stimulants, this really isn't an issue for them. In addition, when considering a drug you don't plan to stop, addiction becomes less important.

Side effects for these drugs are usually mild but even so, people with a history of heart disease or arrhythmia should avoid stimulants in general, including these. The most common side effects are GI related: nausea, dry mouth, anorexia and diarrhea.

Nuvigil is made by a different company than Provigil. While its  slightly different formula provides the same general action,  it is milder and longer acting.That is, if a person was taking two 100mg doses of Provigil per day , they'd need to take one 250mg dose per day of Nuvigil for the same effect. Likely due to Nuvigil's longer and milder action, doctors usually prefer it over Provigil and thus, so do insurance companies. If your insurance doesn't cover this drug, or if the co-pay is high, do ask about generic Provigil. It will be much less expensive. Nuvigil doesn't come in a generic form.

The bottom line is that these drugs are reasonably safe, work well for EDS and may provide an extra short-term bonus of better cognition and/or fewer hallucinations to some people.

armodafinil: The generic name for Nuvigil
DLB: Dementia with Lewy bodies. The Lewy body dementias that starts with cognition issues.
dopamine: A neurotransmitter that facilitates mobility and cognition
EDS: Excessive daytime sleeping. A DLB symptom identified in the official diagnosis criteria.
generic: Non-brand drug name
GI: Gastro-intestinal, concerning the stomach and intestines
modafinil: The generic name for Provigil and for the less expensive generic Provigil
Nuvigil: A milder and longer acting cousin of Provigil. Not available as a generic.
off-label: Used for a condition that the drug is not approved for.
PD: Parkinson's disease, a Lewy body disease and often, a predecessor of LBD
PDD: Parkinson's disease with dementia. The Lewy body dementia that starts with motor issues.
Provigil: A drug accepted by the FDA for treatment of EDS.
psycho-stimulant: brain (psycho)-stimulating drug
working memory: used for holding data while performing thinking skills

The two articles:
Punzi, M. et al. (2017) Modafinil-Induced Changes in Functional Connectivity in the Cortex and Cerebellum of Healthy Elderly Subjects. Frontiers in aging neuroscience, 9, 85. doi:10.3389/fnagi.2017.00085

Lapid, M. Boeve, B. et. al. (2017). Efficacy, Safety, and Tolerability of Armodafinil Therapy for Hypersomnia Associated with Dementia with Lewy Bodies: A Pilot Study. Dementia and geriatric cognitive disorders, 43(5-6), 269-280.  https://www.karger.com/Article/FullText/471507

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Wednesday, February 13, 2019

Local Author Book Fair in Mesa AZ

For all of our readers in the Mesa area, we will be displaying and selling our books at the Red Mountain Library's Local Author Book Fair:
  • Date and Time: Saturday, February 23rd, from 12:30 to 5pm.
  • Location: Red Mountain Library, 635 N. Power Road, Mesa, AZ
Do come out and visit with us! We'll have all of our prize-winning books about Lewy body dementia (LBD) and Helen's novels as well, 8 different books in all.
If you'd like to have us come speak to your organization or group, here's your chance to ask! 
Jim and Helen can talk about:
  • LBD,  how it is connected to Parkinson's and how it is different from Alzheimer's.
  • non-drug methods of dealing with dementia-related behaviors and why that's important.
Helen can talk about:
  • the various ways of publishing your book and the advantages and disadvantages of each
  • using family legends, genealogy, local or national history and imagination to write interesting, fact-based novels.
Books by Helen and Jim Whitworth:
Books by Helen Buell Whitworth:
  • On the Road with the Whitworths
  • Besty
  • The Northwest McCutchens: Generation One
  • The Northwest McCutchens: The Exodus

Friday, February 8, 2019

New to Lewy, Pt. 5. What Do I Tell My Loved One?

In a recent support group the question about what to tell a loved one after they've been diagnosed?

What should I say? Should I tell them at all? Jerry doesn't remember from one minute to the next. Does it do any good to tell him anyway? -- Linda

The group consensus was that yes, Linda should tell Jerry, but only as much as he needed to know at the moment. "You have a brain disease," they suggested saying. Don't go into detail; that will simply confuse them. "Personify the disease," another said, "Call it Lewy, and then when they have problems, like when they stumble, or can't do something that they used to be able to do, blame "Lewy." They know that something is wrong and they need something to blame instead of themselves.

More comments:

When Ken was diagnosed, Ken took it better than I did! He hadn't felt "right" for a while and now he had an answer to why. He made him feel better about himself. It wasn't him, it was the disease.

My dad loves to joke. He always has. He'll say things like, "What did you say your name was? I can't remember." Then he'll laugh, because he actually does remember--this time.

My mother-in-law has Alzheimer's. She will repeat questions and then when she sees that my husband is getting impatient, she shrugs and says, "I have de-men-she-ia, you know." 

When Brian flies off the handle and accuses me of awful things, he sometimes remembers later and feels really bad about it. I tell him it's OK. I know it was Lewy talking, not him.

Danny's hallucinations about bugs feel very real and scary to him. When I tell him that it's Lewy making trouble again, it calms him down. He still understands that the bugs aren't real, but I know that won't last. Even now, it helps to physically sweep all those nasty bugs out the door.

Our experience is that people in general tend to lean one of two ways. The above group are among those who want to know more about an unwanted diagnosis, or are at least willing to accept it. The next group are among those who tend to avoid the difficulties in their lives such as an unwanted diagnosis:

My mom won't accept that there is anything wrong with her. When I tell her that it's Lewy making her angry, she gets madder. "It isn't Lewy, it's you," she tells me. She's fine. I'm the one with the problem.

My wife was a professional cook. When she started making mistakes, she hid them from me but I figured out that something was wrong when I kept getting burn offerings for meals. Then I found a burned skillet in the garbage and I knew we had to go for help.

Carl still thinks he can drive. "I'm fine, he tells me. I've never had an accident. I don't know why you think I might now." I thought things would change because his driver's license was up for renewal. In our state, that means that at his age, he has to take a driving test and I was sure he'd fail. I've ridden with him. He really isn't safe! But that old Showtime kicked in and he did fine!

An almost universal dementia symptom helps this last group maintain their denial. Dementia gradually takes away a person's ability to judge how much they've changed. If a person is denial-prone, they likely won't see those first changes, the ones they could have recognized if their denial hadn't prevented it. But then, as the dementia increases, they can't see the changes. Thus, these people don't have the need for Lewy as their fall-guy. They are fine, thank you. You are the one with the problem!

To deal with a loved one's denial, use the same techniques you use to deal with other delusions: patience, empathy, acceptance and redirection. But no one said this was easy.

Take advantage of time-outs when you are frustrated. A few minutes out of their sight will give you a chance to regroup--and when you come back, they will probably have forgotten the whole episode.

Sometimes, you don't have the freedom to take your time. In situations like Carl's dangerous driving, look for someone else besides you to be the "bad guy." You have to live with your loved one; their doctor or a married child, for example, doesn't. (See these 3/24/17 and 3/27/17 for more about this.

Next week will finally start that series on support groups.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, February 1, 2019

New to Lewy: Pt. 4: Denial, A Part of the Acceptance Process

In a recent blog, Emily talked about how her husband, Ben, was diagnosed with LBD.

I knew Ben had problems but I wanted them to be something curable so that we could get on with our once comfortable life. I just couldn't believe that the doctor was right. For one thing, there were still days at a time when he was practically normal. I thought that if Ben could be so normal even part of the time, then eventually, he'd get better, wouldn't he? -- Emily

Emily was in denial, which is a normal part of the process of accepting a life changing diagnosis--of moving from old expectations to accepting the changes that an unwelcome diagnosis heralds. Those occasional "good times" that Emily described are due to one of the defining symptoms of LBD: fluctuating cognition. A person can have days, or even weeks of apparent normality which can fuel a person's already present denial. However, the LBD symptoms always reappear. and the general progress of the disease over time is always downward.

It wasn't long though until I realized that Ben was getting worse, not better. Yes, he had his spells of alertness, but over time, I could see that his general condition was degenerating. Like it or not, I knew the doctor was right. -- Emily

Although there may be periods of awareness, the general progress will be downward. Because Emily is living with this daily, the severity of Ben's symptoms made it impossible for her to hide in her denial for long. Sometimes, a care partner can become stuck in their denial, especially when the symptoms are less physical and easier to ignore. This is often the case with dementia with Lewy bodies (DLB), where the thinking errors precede the physical problems. Ben's symptoms were strong enough that once Emily could see that he wasn't really improving over time, her denial gradually changed to acceptance. Denial can also last longer for people who have less physical contact with their loved ones.

Our daughter, Ariel, lives in a different state and flies in for quick visits several times a year. "Dad seems just fine to me," she told me. "He's a little slower, but that's all." And when she was around he really was more alert. -- Emily

When Ariel came to visit, Ben went into Showtime, a totally involuntary form of fluctuating cognition that can appear in the presence of people who aren't around the person much but are still important to them. Showtime makes it easier for visiting relatives like Ariel to maintain their denial of a person's true condition.

Why is denial bad? Well, at first, it can actually be a good thing. It cushions you and gives you time to adjust. But when it goes on too long, it becomes a roadblock that makes life more difficult. It takes energy to maintain a denial, energy that could be used to learn how to adapt to the new realities. In fact, it keeps a person from seeing the need to adapt, and so they stumble along struggling to maintain the status quo when that is no longer a real option. When denial lasts for a long time, it usually takes a something drastic to cause a person to let go of it, a fall, an auto accident, or some other disaster.

In Emily's case, Ben's symptoms were strong enough that she had to let go of her denial before that happened and was able to move on. However, Ariel who only heard of them but didn't see them, kept hers and thus, was unable to give her mother the support she needed.

How can you help a person move out of denial? Sadly, denial is a lot like a delusion. In both cases, the person involved is stuck in their own reality and confrontations only make the situation worse. The difference is that trying to change a dementia-related delusion is futile. To some extent, that is also true with denial, but the difference is that the person in denial still has the ability to think--if you can get past their protective defenses and help them to do so.

As with delusions, you first have to support the person where they are--in their delusional denial. In other words, you must become their friend, not their enemy. If they have to defend their belief, you are lost before you begin. You don't have to believe them, but you do need to show that you accept their view. "Yes, I see where you are coming from. Maybe that's so," you might say.

Then you may be able to gently move them towards reality, "to gather a few more facts," you might suggest. This works best if you are willing to move with them, to make it "something we do together" such as going to the doctor or a support group, or even doing some research on the computer.

There, you can ask the questions that the person may be afraid to ask. Then, by playing devil's advocate and challenging the answers, you can reinforce your connection with them and likely, get some even more detailed answers.

Finally, make a point of accepting these answers with apparent reluctance. Mirroring the same reluctance, the person may be able to to begin letting go of their denial and start the move into acceptance.

If you are the one who is dealing with that unwanted diagnosis, you may be in denial and not know it. A good thing to do in this case is to consciously assume that you are experiencing some denial even though it may not feel that way at the time. (One aspect of denial is that the person truly doesn't recognize it in themselves!)

Give yourself a few days to get used to the idea of the changes to come. Then do a personal review. If you still believe that the diagnosis is wrong, what do you need to support that belief...or to change your mind?

Re-evaluate the events and symptoms that led to the diagnosis using any new information you have gathered. Then imagine that the person involved is someone else...someone you aren't connected to. Would you believe the diagnosis then? If so, what is keeping you from believing it now?

If you can see that it may be your fear of what is to come, then you are likely in protective denial. If you can accept this intellectually, you can probably move on to accept it emotionally.

Once a person lets go of their denial, they can begin the process of finding ways to keep life as normal as possible. One of those is to use the many benefits of support groups.

Next week, the final blog in this series: what to tell a loved one. The week after that will start a new series about support groups.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 25, 2019

New to LBD, Pt. 3. After the Diagnosis

Ok, we have a diagnosis and it sure sounds like what Ben has been experiencing, but what do we do now? I'm just so full of questions. The doctor says it's incurable. Is that really true? If so, can we slow this down? The doctor says the medicine she prescribed will probably stop some of Ben's odd behaviors. We've always been advocates of alternative options to heath care though. Are there any alternative options we can try? Will they interfere with his drugs? -- Emily

Emily is showing the normal confusion a person tends to feel with news like hers. All of a sudden, she is seeing her life change and seeing that what used to be a partnership is going to gradually morph into a lot more responsibility for her. Like many in her position, she is less angry or resentful than she is worried that she won't do it right. And that's a setup for guilt.

Accept that you are human. Emily's first step is to accept that she won't get everything right...but she will do the best she can and accept that she isn't perfect. Ah yes, easy to say, but not so easy to do! And that's the next step.

Find a support group! The people in a good support group can answer most of her questions. Their stories of their own experiences and dilemmas how they dealt with them can give her a feeling of belonging--they've been where she is now. And their understanding will give her a feeling of security that she may not find if she tries to do this job alone. (See New to Lewy, Pt 1 for a little more about groups.)

Use your resources. If you were referred to a nurse practitioner or social worker, be sure to take advantage of this. These professionals are there to help you find your way through all the non-medical issues that come up, from ideas on how to deal with those odd behaviors to what it means to be a person's advocate to the need for self-care and much, much more. They can also help you deal with any denial you may be feeling. Denial is a common part of the process towards accepting and then dealing with a life changing diagnosis. If you weren't referred, ask for a referral! Oh, yes, if you haven't found a support group yet, they can help you with that too!

Do your homework. As an advocate, you need to educate yourself about the disease.

When my first wife, Annie, started having LBD symptoms, I was an electrical engineer and all that medical stuff was just so much mumbo jumbo. But I was concerned and I stuck with it. I found articles that used plain, understandable words that described Annie's symptoms. I took this information to the doctor and asked for more clarification. -- Jim Whitworth

You can do what Jim did. Our books, shown below, are are a great start. They all written with the stressed, often non-medical care partner in mind, as is our website. The National Institute on Aging also offers a free 40 page book called Lewy Body Dementia: Information for Patients, Families, and Professionals. Of course, the LBDA website is also a great help. Another good resource is Timothy Hudson's Learning to Live with Lewy Body Dementia. In fact, check out Timothy's list of other resources.

Learn about alternative drug options. Emily asked about alternative therapies. This is a valid question. The doctor will likely suggest some medical treatment. However, a knowledgeable doctor will also recommend trying to manage behavioral symptoms with non-drug alternatives before using drugs. That's because the most  behavior management drugs are likely to trigger LBD's drug sensitivities. Even when you do use drugs, adding non-drug options usually means you need smaller doses to get the same results. You can find out about non-drug options on our website, or in our books, listed below.

Next week is about dealing with the denial that often follows a life changing diagnosis.


For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 18, 2019

New to Lewy, Pt. 2. The Diagnosis

Last week was about the behaviors that Ben displayed that instigated his visit to a doctor and the doctor's subsequent diagnosis of LBD. However, his wife, Emily, is having difficulty accepting the diagnosis.

When Ben's doctor diagnosed him with LBD, he was relieved and willing to accept what the doctor said. "I know I've been acting different and now I know why," he told Emily. But Emily was still worried. "I can't believe that Ben has dementia," she said. "Even after the doctor explained the differences, I still can't get my mind around the idea that he has an incurable disease that is going to disrupt our lives. I had hoped for some medication that would cure Ben of his delusions. I can deal with what the doctor called Active Dreams and even the "little people" he sees, but those delusions were making my sweet, loving husband ornery! (See last week's blog for a longer description of Ben's symptoms). Dr. Kennedy didn't do any tests. She just diagnosed him mainly based on my reports. Maybe she's wrong. How would I know? -- Emily

Emily's question can be broken up into several parts:

How can you judge accuracy of your doctor's diagnosis?

Do your homework. If you recognized symptoms that led you to believe your loved one might have LBD before you saw a doctor, read the following articles. They will give you a head start on the questions to ask. (Or read them when you get home from a doctor's visit where an unexpected LBD diagnosis was suggested. They will still give you a lot of insight about what to do next.):

Finding a Doctor to Diagnose and Treat LBD. The LBDA is always a great source of caregiver information.
Get an Accurate Lewy Body Dementia Diagnosis.  Tim Hudson always has good, well thought-out information.
What Doctors Should Ask Patients to Recognize Lewy Body Dementia  This will help you know how LBD-savvy the doctor is.

Ask questions. Besides knowing what the doctor should ask, there are questions that you should ask too. Don't be afraid to ask about the doctor's expertise with LBD. Has he/she had any training about it specifically--not just dementia, but LBD? How many people with LBD have they diagnosed in the past? How many are they treating now? Next, notice the questions the doctor asks. Are they similar to the ones in the above article?

Expect a referral for support. A doctor well versed in the issues around LBD knows that their patients and family need much more than medical treatment. Expect a referral to a nurse practitioner or social worker who specializes in this support. If it isn't offered ask and if it isn't available, consider it as one sign that perhaps this doctor isn't the one you want to see for this issue.

Don't do this alone. There are a multitude of reasons for finding and utilizing a support group. One of the first is to help you find and recognize a LBD-savvy doctor, and then to know how to deal with this life-changing diagnosis. Find a list of local groups on the LBDA Support Group page. The LBDA also has a list of online groups and so check them out too. Start with these but there are many more. Jim's favorite is Caring Spouses,  It is limited to spouses but there are many others. Actually support groups are so important that they deserve a whole series of blogs and eventually there will be. In the meantime, the LBDA lists and this article in Lisa Cook's Lewy Warriors blog can get you started.

Consider a second opinion. Even if you are fairly comfortable with your doctor's diagnosis, a second opinion is often a good idea. In Ben and Emily's case, she needs it to help her deal with the denial she is feeling...the resistance to the idea that their lives will be changing due to Ben's diagnosis. Also, if your first diagnosis was by a family physician, getting a second opinion from a specialist is a good idea. A good family physician can identify a multitude of warning signs and knows when to refer.

To find the right person for your referral, you will need to know what your insurance allows.  (My doctor's office staff does this research for me. Your's may too!) And then of those choices, who does your family doctor recommend and why. If you have a choice, check with others in your support group. Who do the they recommend? Once you choose someone, ask them the same questions you ask the original doctor and follow the recommendations in the above articles as well.

 If you are still uncomfortable with a diagnosis...if for instance, it doesn't seem to fit the symptoms that your loved one has, don't be shy about asking for a third opinion! The statistics show that people usually see at least three doctors before they are diagnosed with LBD. This makes Emily and Ben's experience unusual. He was diagnosed with LBD right away. This may not be the case for you. Conversely, your loved one may be diagnosed with LBD but not really have it. As it becomes more well known, its many and varied symptoms can make it a kind of catch-all diagnosis. As your loved one's advocate, part of your job is to evaluate each diagnosis against what you already know about your loved one and seeing if it fits. If you don't think it does, ask for yet another diagnosis!

One last warning. When asking for another diagnosis, where are you emotionally? Is it possible that the problem is with you and not the diagnosis? Are you are in denial, as Emily was, and having difficulty accepting a diagnosis that does actually fit? Take a deep breath and check this out before going further!

Next week's blog is about what happens after the diagnosis.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's & Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding a Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Friday, January 11, 2019

New to Lewy, Pt 1. Early Symptoms

Jim monitors several online LBD caregiver support groups. The following is the sort of post he often sees from newcomers:

I just learned that Ben has Lewy body dementia. He'd been doing some odd things for a while...thrashing around in bed, seeing little people that I couldn't see. We could live with that, but when he started arguing with our neighbors over imagined slights, I decided it was time to see a doctor. Ben has always been a guy with an even temper and a smile for everyone. This just wasn't like him. I finally got him to go see Dr. Kennedy. I'm sure glad I went with him! He was so normal, the doctor couldn't see much wrong with him. But when I started telling her what had been happening, Dr. Kennedy started nodding her head. She says that what's going on with Ben sounds a lot like this thing called Lewy body dementia, or LBD, as she calls it. That's what is making him act so odd.

Dementia? I thought dementia was forgetting things. Ben doesn't forget, he obsesses! But Dr. Kennedy told us that there's a lot more kinds of dementia than just the kind where people start out by forgetting. We left her office so confused! Ben seems relieved to have a name for his odd behavior but I'm still not sure. Dr. Kennedy just diagnosed it from what I reported about his odd behaviors. She didn't order any tests. When I asked about that she said there were some tests but they were awfully expensive and they wouldn't tell us much more than she could, just from his symptoms. She said that what Ben had wasn't curable, that it would get slowly worse. That's awful! Maybe he has something curable? How do we find out? - Emily

Emily's post generates a multitude of questions:

What are the symptoms that Ben's doctor used to diagnose his LBD? How did she decide it was LBD and not another type of dementia, or something that wasn't dementia at all?

Thrashing around in bed: When a person dreams, the brain normally switches off the ability to move. LBD interferes with this and the result is Active Dreams where a person physically acts out their dreams.

Seeing little people that Emily couldn't see: Seeing hallucinations early on is a definitive sign of LBD, vs. Alzheimer's where these show up much later in the progress of the disease.

Imagined slights: LBD affects the ability to think before it affects one's memory--another way it is different from Alzheimer's. This leads to delusions, based on emotions rather than fact. Since negative emotions are initially stronger than positive ones, delusions are often negative: imagined slights, rather than imagined complements--and a change from Ben's normal positivity.

Arguing with neighbors: Most dementias cause a loss of impulse control. Normally, a person might choose to laugh at or ignore a slight, especially if arguing might make further interaction difficult. However, without impulse control, Ben acts on what he feels without considering the consequences.

Fluctuating cognition: When Ben saw the doctor, he seems coherent and normal. She didn't see much in her office that signaled dementia. However, Emily's reports of his actions told a different story. This is another definitive sign of LBD, vs. Alzheimer's. While both tend to cause a person's cognitive abilities to wane over time, with LBD, there can be occasional upturns. When this happens in the presence of someone other than the care partner, and especially someone important to them, such as a doctor or a visiting family member, it is called "Showtime."

We aren't suggesting that you use this information to make your own diagnosis! A lot more goes into that besides recognizing a few symptoms, including knowing how to treat the illness. Instead, use it to recognize the need to see a doctor. If your loved one has been diagnosed with Alzheimer's and is displaying these symptoms, consider asking if they might also have LBD.

Drug sensitivity is a common LBD symptom that Emily didn't mention. This is also more common with LBD than with other dementias and so an accurate LBD diagnosis is important simply because of this. Some drugs that are used fairly often with other dementias can often trigger this sensitivity, causing more problems than they solve.

While you do need to get that diagnosis and listen carefully to what the doctor says, you should never follow a doctor's advice blindly. Ask questions while in the doctor's office and do some reading about it when you get home. You are your loved one's advocate. That means that you need   to understand why the treatment is recommended and what it is supposed to do...and of course, the possible side effects that you should look for.

You also have to be able to trust the doctor, which means you need to do your homework there too. Not all doctors are well versed in working with LBD. This could easily include your family practitioner. However, they likely know someone in your community to whom they can refer you, for a second, more educated, opinion.

Next week's blog will be about learning how to judge the accuracy of your doctor's diagnosis and getting a second opinion.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.