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

Friday, March 22, 2019

Decoding the DLB Diagnostic Criteria, # 1

This is the third time that the diagnostic criteria for dementia with Lewy bodies (DLB), first published in 1996, has been upgraded. But this is the first time that biomarkers have been added. Well, that's not quite right. Some of the tests were there, the DaT, for example, but the category of biomarker is new.

Even now, the only totally accepted objective test for most neurological diseases, including those in the Lewy body family, is via an autopsy. For years, doctors have diagnosed these diseases subjectively, via their educated guess about a person's reported symptoms. While Lewy-savvy doctors tend to be accurate compared to a later autopsy a high percentage of the time, the opportunities for mistakes with this kind of diagnosis are great.

A good diagnosis depended on the expertise of the doctor and the accuracy of the symptoms reported--when they were reported at all. An example of this were the Active Dreams that Annie had for years and were never reported to the doctor...or asked about. Of course, that was years ago, before the doctor knew to ask...but some still don't!

Enter biomarkers. These are objective tests that can be measured and repeated. None are yet accepted as 100% accurate, but that will come. In the meantime, they've made an accurate diagnosis much more likely, even when performed by less Lewy-savvy doctors.

However, until there is a biomarker that the experts can trust to provide a 100% accurate diagnosis, they are not going to say that any DLB diagnosis is totally accurate. Therefore, the criteria is still divided into Probable and Possible. The main change beside more focus on biomarkers is that two new symptoms have been added: the loss of smell and excessive daytime sleeping. (Hey! many of you exclaim...I knew that! Yes, but now it is there for the doctors to use as well.)

BTW, when we talk about diagnosis, we also get into an issue about what LBD, DLB and PDD mean. All the initials are confusing, but you can make it easy by noticing first initial in each case:

  • LBD (Lewy body disease) is an umbrella term for all these two diseases caused by Lewy bodies.
  • DLB (dementia with Lewy bodies) is the disease that starts with Dementia 
  • PDD (Parkinson's disease with dementia) is the disease that starts with Parkinson's. 

If you are interested in the history of how the terms, Dementia with Lewy bodies, Parkinson's with dementia and Lewy body dementia evolved, read these 1/11/15 and 1/30/15 blogs.

Now, back to the 2017 criteria. First you may want to know why it is just for DLB and not for LBD as a whole. PDD has its own diagnosis, published by the Parkinson's community. It is structured and worded differently but says very similar things about the non-motor parts of the disease. The criteria for deciding if a person has DLB or PDD is arbitrary: If the movement symptoms occured at least a year prior to cognitive symptoms, it is PDD, otherwise, it is DLB. But there are some other differences. My guess is that as biomarkers get more efficient, we will have a more objective way to tell the two apart.

This diagnosis is written for doctors, not stressed-out care partners, or even retired nurses. I've had years of nursing experience and more years of doing dementia research--and I had to look my many of the words. An example was hyposmia, which I discovered was the loss of smell. Hypersomnia, was a little easier. I could figure out hyper (elevated) and somnia (sleep) but I still checked it out to find that it meant excessive daytime sleeping.

Therefore, this series of blogs will be a "decoding" of the criteria, starting with the first criterion. The original will be italicized, followed by definitions as needed and a rewritten version of the criteria "in plain English," also in italics. (The sections about symptoms aren't so filled with scientific gobbledy-gook but just wait until we get to the biomarkers!)

Essential Clinical Feature

Essential for a diagnosis of DLB is dementia, defined as a progressive cognitive decline of sufficient magnitude to interfere with normal social or occupational functions, or with usual daily activities.
  • clinical feature: physical symptom
  • progressive decline: ongoing, continually getting worse.
  • cognitive: related to intellectual activity such as thinking, reasoning or memory.
In plain English: There must be evidence of cognitive loss great enough to interfere with social, occupational or daily living functions.

Prominent or persistent memory impairment may not necessarily occur in the early states but is usually evident with progression.

In plain English: Obvious or lasting loss of memory may not appear until later in the progression of the disease.

Deficits on tests of attention, executive function and visuo-perceptual ability may be especially prominent and occur early.
  • deficits: lower than normal scores
  • attention: the ability to focus, pay attention for a period of time without being distracted
  • executive functions: thinking, reasoning, plan, learn, and other similar cognitive tasks
  • visuo-perceptive ability: hand-eye co-ordination, depth perception and other vision-related tasks
In plain English: Cognitive skills related to attention, performing tasks, and visual perceptions are likely and tend to occur early in the progression of the disease.

Next week, we'll look at the Clinical Features, or symptoms. In the meantime, you can read the 2017 criteria for yourself. Feel free to ask questions. I'll try to answer them as I go along.

And here is another reminder about the differences between LBD, DLB and PDD and some of the words you will be seeing regularly in this series of blogs:

LBD is an umbrella term for all Lewy body diseases and starts with an L for Lewy.
DLB is for Dementia with Lewy bodies and starts with a D for the way the disease starts.
PDD is for Parkinson's disease with dementia and starts with a P for the way that disease starts.
Biomarker: Something measurable that can indicate the presence and severity of whatever you are testing for.
Indicative: A strong sign.
Supportive: A weaker sign that can still be helpful.
Probable Diagnosis: almost--but not quite!-100% accurate.
Possible diagnosis: Likely, but unproven without further evidence.

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, March 15, 2019

Support Groups, Pt. 4: What to Look For

Once you've found a group close to you that appears to fit your needs, attend the group and ask yourself questions like these:

Is confidentiality a high priority? A statement similar to "what is said here stays here" should be made at every meeting as a reminder...and a promise. New members especially feel uncomfortable sharing information about loved ones and their difficult behaviors--and their sometimes irrational responses as well. They need to know that their stories aren't going any further.

Does everyone who wants to get a chance to share? This has a lot to do with group size and time but it also has to do with group guidelines. Is there some method by which members are limited to a fair amount of time each? Some groups delegate a timekeeper, for example. In others, a facilitator might gently remind members about the need to move on when someone takes more time. Or a member might willingly give up their turn to give a needy member more time, with the understanding that they would go first at the next meeting.

Is there a variety of care partners from all levels of care? Besides members who've been active care partners for varied periods of time, the ideal group has a surviving care partner or two, some and a few new people. As one person put it, "We need some to lead us, some to walk and laugh and cry with us and some to come along behind and learn from us." An ideal group will also have a mix of members who have loved ones at home and in a care center and a some long distance caregiver or two, who are trying help loved ones who live elsewhere. A varied group gives members wider perspectives and a chance to learn more about some of the choices they may need to make, such as how to go about choosing a care facility.

How is venting dealt with? This is a sensitive subject for support groups. It is an needed and important part of the group but it is also the one new members complain about the most. The release of held-in frustrations, followed by supportive responses from members who've felt the same way at times, can be very bonding and should be encouraged. When this interaction is followed by a discussion of workable suggestions for limiting future frustrations, the experience can be uplifting. However, when the venting is allowed to turn into a mutual gripe session or a game of one-upmanship, it can be depressing and off-putting. The facilitator or a group member can change this by moving the conversation on to solutions: "How did you deal with this situation?" Or "When that happened to me, it helped to do such and such. How about the rest of you. What has worked for you?" Being able to vent is freeing for the moment but the shared suggestions, ideas and facts are what send group members home rejuvenated and hopeful instead of more depressed.

Is the atmosphere positive and supportive? Do group members listen carefully before commenting? Is interrupting discouraged? Do you hear words of encouragement and support like "You did the best you could" or "Good for you!" or "Wow, that must have been hard!"

Is criticism and judgment discouraged? A member might respond by sharing a different solution but this needs to be done with respect and encouragement, not judgmentally. Everyone deals with their issues differently and this should be respected.

Does the group stay on track? If a conversation wanders, does the facilitator or someone else step in with a friendly comment like, "Let's move on. I think it is Connie's turn to talk." Care partners usually have limited time and it needs to be used constructively. While they might enjoy a gossip session at another time, and maybe even benefit from the freedom of talking about other subjects, this is not the place. You came here for support with a difficult job and that is what you deserve.

Does learning take place? A support group is not just a place to get emotional support, as important as that is. It is also a forum for sharing experiences, and passing on what worked and what didn't for the members. One member commented, "I always learn something when I come to a meeting." That is as it should be. Learning something to take home and try out is energizing and we all know how much a care partner needs that!

After you've done your inventory, you may think you don't want to go anymore. If the reason is something serious, like too much criticism, talk to the facilitator. If it is just a feeling of uncomfortableness, that is normal in such a new situation. In any case, make a promise to yourself that you will attend for at least two more meetings before you decide to drop the group. As you begin to benefit from the group, you are more likely to want to stay. If you still don't, consider telling the facilitator why. It may help them have a better group.

Next week: A new series starts on the 2017 Diagnosis Criteria for Dementia with Lewy Bodies

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, March 8, 2019

Support Groups, Pt 3. Finding a Group

The first step towards finding a local LBD caregiver support group is to go to the LBDA website and search their support group database to find the group nearest you. If there isn't one near you, find the nearest one and call the listed facilitator. That person can probably tell you if there are any groups in your area that might work. If there is a large dementia treatment center near you, their staff are good resources. Also ask your doctor--or better yet, the nurse.

Next use your computer. Go to the Eldercare Locator and put in your zip code or your city and state. You will get a list of helpful agencies such as the Area Agency on Aging. Go to their Caregiver Corner to get some national results. Call the services that seem appropriate and ask them about LBD support groups. Finally, call the Alzheimer's and Parkinson's associations in your area and ask about LBD specific groups. Both may offer some, and lacking that can tell you which of their groups would be the most compatible.

Virtual groups.

The LBDA is a good starting point for online groups too, with their LBDA FaceBook Care Partner Support Group and Jim's favorite, the LBD CaringSpouses. You have to be the spouse of someone living with LBD to belong to that group but the first one is open to all care partners. The LBDA also has a Living with Lewy Facebook group, which is open only to those living with LBD.

Facebook now hosts four other LBD related support groups:
Lewy Body Dementia Carers
Lewy Body Support Group
Forget Me Not - Lewy Body Dementia
Lewy Body Dementia Caregivers Support Group

Incidently, in searching for support groups on FaceBook, I also found the following LBD-related FaceBook pages:
LBD Tools: our own, of course.
Lewy Body Dementia Association. The LBDA's FaceBook presence. Timothy Hudson's FaceBook page. He has a great blog
Lewy Body Dementia Beyond Diagnosis. By a person living with LBD.
Living with Lewy Body Dementia  A daughter's journey with her father who is living with LBD.
Lewy Body Dementia Journeys. One family sharing their journey.
Lewy Body Dementia Awareness . A group that wants to raise awareness of LBD.

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, March 1, 2019

Support Groups, Pt. 2: Questions to Ask

The last blog explained why support groups are a necessary part of a healthy care partner experience. But what do you look for in a good support group? Jim and I both know from personal experience that although a support group can be a highlight in a care partner’s life, it can also be a true bore, or even worse, a depressing event. What makes the difference? Well, a lot depends on its physical attributes, guidelines, structure and facilitator. To start, ask yourself:

Do I want a local face-to-face group or virtual online group? Each has their unique values and many care partners recommend that if possible you use both. A local group gets you out of the house and meeting other, like-minded people who over time may become friends. However, not all communities have local LBD oriented groups. Also, these groups usually only meet once or twice a month. You can find many LBD-oriented groups online and they are all ongoing. You can go to one any time of the day or night every day. Another advantage of virtual groups is that you can probably find a discussion about almost any subject at any given time just by doing a search.

When you find a local caregiver support group, ask questions like these:

Is this a general or a LBD-specific group? It is usually best to choose a LBD-oriented group.  Members in a general caregiver support group may not be able to relate with dementia-related issues. Those in a general dementia group or an Alzheimer's group may not be able to relate with the LBD specific symptoms such as movement issues and hallucinations. Members in a PD group may, but they may be resistant to dealing with dementia issues. However, if that isn't available, choose the best fit possible and supplement it with online LBD-specific groups.

Am I eligible to attend the group? Some groups are open to any interested person and some limit their members to only certain groups such as spouses, adult children, teens. Open and closed groups each have their value. You get a broader view of the issues in the open group and usually, more attention to those issues specific to your own in the closed groups.

Where does the group meet? Many meet in care centers, but some meet in private homes, senior centers or hospitals. Some groups meet in restaurants. If that is the case, ask where the meeting area is. We've attended such groups where the meeting area was right in the middle of the main room, which lend itself to talking about confidential issues. Others where it was in a separate room or area where members felt comfortable to talk.

When does the group meet? For a care partner who is also working, an evening group is usually better but for a full time care partner, an afternoon group is. By evening, few care partners want to leave the comforts of home!

How large is the group? From six to ten people is ideal. Any smaller, there is likely to be a good cross-section of issues and suggestions. A larger group decreases the feeling of intimacy that is needed for a successful group. Besides, not all members may be able to share.

How long does the group last? An hour and a half is ideal. Any longer without a break and people tend to lose focus. A larger group may go for a couple of hours without a problem.

Are the start and ending times are clearly stated--and kept? Care partners usually have limited time that they can be away from home and will feel anxious if kept longer than the expected time.

Do you have day care available for my loved one? Some groups, especially those that meet in a care center, offer free daycare during a support group. These will allow you to bring your loved one along and they can get a taste of what being in a care facility is like. They usually provide entertainment, music, singing, story telling, etc. during this time to keep it interesting.

What is the cost for the meeting? If there is a fee, be wary! There may be a small charge for daycare, or if an association is holding the meeting, they want you to join. But the meeting itself should be free.

Next week, more 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, February 22, 2019

Support Groups, Pt. 1: Why You Need One

support group

Individual care partners coming together to share, learn and encourage.

Past blogs have mentioned how important we feel it is to be a part of a caregiver support group. In our latest book, Responsive Dementia Care, we wrote:
There are many excuses for not attending a support group:
  • I don't have time, or the energy.
  • I don't want to listen to other people whine.
  • I don't want to talk about my loved one--it sounds disrespectful.
  • I'm awfully private, I'd never be able to talk to strangers.
  • And so on.
But group members tell a different story:
  • I don't know what I'd have done without my group!
  • My support group gives me strength to keep on.
  • I can talk about my loved one here and the group members understand; they've been there. They know my loved one's behavior is dementia-caused, not personal.
  • I learn new ideas, new ways to do things, new resources."
  • I come away from the group feeling stronger. How do caregivers survive without a support group?
Support groups do all of that and more. They relieve loneliness from the isolation that is endemic with dementia care partners. The feeling that you aren't alone on this journey can be a great stress reducer and depression chaser.

Our book, A Caregiver's Guide to Lewy Body Dementia, talked about the value of being able to vent and share experiences in support groups:
"Thank goodness I have my support group. When my health aide insisted that I try going, I wasn’t sure I should leave Emma that long. But I come back feeling so much better and more able to cope. You can relate. I hate to bore my friends with my ups and downs and besides, they don’t really understand. My family supports me but they don’t understand either. You can’t if you haven’t lived it. -- Howard
Howard’s group relates. He can vent and his group knows he is simply frustrated, he doesn’t want out. He can ask, “How do you handle this?” and get answers from others who have had the same problem. He can make jokes about his situation and his group members aren’t shocked; they laugh with him. He goes home feeling better about himself and his situation.

In a well-run group, venting isn't the whining mentioned earlier as an excuse not to attend. It is instead, a needed release of frustration, usually followed by some supportive a few "I've been there too" comments from other group members, followed in turn by some constructive suggestions about what worked and didn't work for them in that situation.

Next week: What to look for in a good support group.

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.

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