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

Friday, June 21, 2019

Summer Schedule

This week we are Conference bound and so we did the blog early in the week. Do check it out. Even if you won't be at the conference, you can download the information about our poster.

Next week's blog will be the third in our series on When Nothing Works. Then there will be another break for the 4th of July. Then on July 12th, the final blog in that series will appear. We aren't traveling this summer, but we are experiencing our first summer of over 110 degree temperatures and the lethargy that goes with that. Therefore, we will keep to our summer every other week blog schedule.

We hope you have a wonderful summer!

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.

Monday, June 17, 2019

The International Lewy Body Dementia Conference

This week's blog is early because we wanted to get this information out to you in time for you to consider going. We will be there!

This conference, sponsored by the Cleveland Clinic and the LBDA, is a forum for research scientists, clinicians, and other health care professionals to share the latest information from each of their disciplines. In addition to highlighting the progress made in the various areas of research, this conference will provide an opportunity for patients and caregivers to be exposed to new knowledge and to interact with researchers, clinicians and other patients and caregivers.

Individuals who have been diagnosed with Lewy Body Dementia, their family members and their advocates are invited to attend.

For more information about the conference, you can click on the link below to download the Conference Brochure. It will open in a separate window.


To visit the conference website, you can click on the link below which will open in a separate browser window.


Not only will we be attending, we are joining Rosemary Dawson in presenting a poster on Tuesday, June 25th.

Poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes.

Presenters: Rosemary Dawson, Ed.D.; Helen Whitworth, MS, BSN; and Jim Whitworth, LBDA co-founder

You can click on the buttons below to get copies of the whole poster and of a slide presentation that Rosemary made from the poster information. Both will open in separate windows. Warning: These two files are very large and should not be opened on a cellular devise. The poster will appear very small on your browser; zoom in to see it better. You will need a PowerPoint program on your computer to view the slides.

Poster           Individual Slides             PowerPoint Presentation

To learn more about us and the presentation, you can also download the following documents:




Finally we have a special invitation to all of you:

Informal Meeting at the International Lewy Body Dementia Conference

If you are a conference attendee who is living with LBD, a LBD care partner, or someone who supports both, do plan to attend this informal meeting. It will give many of us who have met online a chance to meet person and those who have met already met a chance to reconnect.

WHEN: Monday, June 24th directly after the last session at 4:30 pm until the all-conference reception that begins at 6:00 pm.


WHERE: In the Patient and Care Partner conference room


WHO SHOULD ATTEND: People living with LBD, current and former LBD Care Partners, and people who support them (support group moderators and facilitators, Lewy Buddies, etc.). Spouses, family members, and others who are accompanying the above are also encouraged to attend.


WHAT TO EXPECT: This is an opportunity to mingle and network with others. We will also share some resources and information in an informal way.


RSVP: Not required; just show up. If you want to let us know that you will be there, email LewyBuddyRo@gmail.com.


QUESTIONS: Email LewyBuddyRo@gmail.com
We are looking forward to meeting many of you at this conference.


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, June 14, 2019

When Nothing Seems to Work, Part 2

Last week started a series on dealing with difficult behaviors. That blog noted that the first line of defense has to be the care partner's own self care. Only then can you expect to a) respond appropriately to your loved ones unwanted behaviors and b) avoid having your loved one react to your underlying and stressful feelings instead of what you are doing and saying overtly.

This week's blog is about how while dementia changes many things for both the person living with the disease and their care partner, not everything changes--or it only partly changes.

A person living with LBD (PlwLBD) is usually just a more difficult version of the person they were before. Likewise, the relationship you had with your loved one will likely be similar to what you had before, only there will probably be more negatives and these will be more extreme. That's because the dementia-riddled brain:
  • is one track, going first with the most demanding emotions, which will usually be negative.
  • processes in an all or nothing mode, so that any negativity at all will likely be exhibited as extreme.
We know a young couple who have a very stormy relationship. It cycles from angry arguments to passionate make-ups and back again. This works for them--now. Both of them would tell you that they are married to the love of their lives. "It keeps our relationship interesting and fresh," they say. Even so, I dread to think how that couple would fare if Lewy entered their lives!

Another couple we know are just as committed to their spouses. However, their relationship is much less bumpy and exciting. "We enjoy each other. We have our differences but we can usually talk it out," they say. This couple would probably be able to deal with Lewy much better.

Sadly, dementia multiplies the negatives in a relationship and often ignores the positives. It's the way the brain works. Negatives are given crisis status and therefore are the first to be noticed. That's fine as long as a person can think abstractly. Then, we can look past the negatives to the positives and see that they outweigh the bad. "A person with the ability to think abstractly might say, "I don't like the way my life has changed, but I still have many things to enjoy." The dementia-damaged brain can't do that. It stops with the first information it receives -- "I don't like the way my life has changed."

Even with help, the PlwLBD isn't going to be budged. This is their truth, their reality. Loving, patient explanations aren't going to change that. Angry, frustrated responses will only fix it firmer in place. All your efforts will do is cause your loved one to believe that you don't care and aren't even trying to see it their way--the only way.

Successful dementia care requires huge amounts of empathy in care partners. With it you can enter into a PlwLBD's reality and have a chance of useful communication. On the other hand, dementia takes away the PlwLBD's ability to empathize and so this isn't a two-way street. Don't expect a PlwLBD to understand your frustration, your fears, your worries or your hurt feelings. Instead, they will pick up the emotions you broadcast and mirror them back at you as their own anger and frustration--with no recognition of your feelings and no need to help you feel better.

Back to the couples mentioned earlier, the first couple dealt with their differences by fighting about them, with very little empathy for each other. The second couple made an effort to empathize and come to a mutually acceptable solution. If Lewy hits, empathy is going to go a lot sooner for the first couple than it will for the second couple. Again, what we were is what we get with Lewy, only worse!

The moral of this blog might be "Work to have positive, empathetic relationships while you are healthy because that becomes even more important--and more difficult--when illness hits! Of course, most of those who read this will be beyond the ability to prepare...you are already in the midst of dealing with the damage dementia causes! But all is not lost. Although the PlwLBD is beyond change, the dementia care partner still can. You can focus on being positive instead of broadcasting those volatile negative emotions. You can be empathetic and thus able to respond to your loved one's reality rather than your own.

Or you can if you've taken the first step and are making these efforts with a rested mind and body! But even then, nothing works all the time. It may not be because you "didn't do it right" but just because Lewy is being perverse and difficult. You just have step away, and then try something else...ask for help, ask for ideas.

New week, more about dealing the difficult behaviors and staying sane.

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, June 7, 2019

No RVing this Summer: The Cleveland International Lewy Body Dementia Conference Instead.

The second blog on the series of When Nothing Works will be here next week but this week, we wanted to make an announcement about our summer plans. We wanted our readers to know what was happening so that perhaps you could join us in Las Vegas later this month.

This year we are staying in Arizona for most of the summer. Jim has decided that the time has come for us to quit RVing. We both have issues that make this a smart, if unwelcome choice. Although we will miss RVing, we know that this is like the choice to stop driving altogether. It needs to be done before the minor problems cause bigger ones...and it works best when it is the driver who chooses to stop.

But we are going to take a couple of trips in our car. The first will be to Las Vegas, where we will be joining many other LBD caregivers, advocates and professionals at the Cleveland International Lewy Body Dementia Conference. On Tuesday, June 25, we will be presenting a poster: Non-drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Changes. Rosemary Dawson ED.D., who moderates the Caring Spouses and Life After Lewy groups and is very active with the LBDA, will be with us. In fact, she is the one who designed the poster with our input.

Our poster shows a a variety of non-drug methods for dealing with behaviors, most of them also included in our book, Responsive Dementia Care: Fewer Behaviors Fewer Drugs. If you come to the conference (and we hope you can!) be sure to come by and talk with us!

The conference is three days long with lots of LBD related subjects. It is divided into a Scientific Track and a Patient and Caregiver Track. We've attended both kinds and believe me, this is a blessing for those of us who aren't up on all the scientific language. However, we hope that if there is something we especially want to learn that isn't being presented in the caregiver track, we can cross over.

We are looking forward to learning more about biomarkers and imaging and much more to pass on to all of you.  Here is the brochure. Check it out and plan to come join us if you can. We'd love to meet you there!

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, May 31, 2019

When Nothing Seems to Work, Part 1

As educated care partners, we know a lot of techniques to use with our loved ones: be patient, be accepting, be empathetic, remember it's Lewy talking, go with the flow, keep my sense of humor, and on and on. But sometimes, none of it works. What then?

First, are you starting in the right place? Have you prioritized your self care? As educated care partners, we all know how important that is. But are you letting the urgencies of your loved one's care override your own seemingly less urgent needs? If you are, then no wonder nothing is working!

Before you can expect to be successful in managing your loved one's difficult behaviors, you have to be able to manage your own responses to those behaviors. Even when you know the correct response, you won't be able to do it if you are functioning in crisis mode. And that's where a care partner who has neglected their own needs can easily be. Overworked, tired, frustrated and hurting from back aches or more. This is the norm for many care partners.

"But I barely have time and energy to take care of my loved one. How can I be expected to spend more time and energy on self care?" they say. Like many of the things involved in dementia care, the answer to this question is that it may not be easy but it IS imperative. You, rested and alert, are your most important caregiving tool. You, overburdened and frustrated, are your most damaging caregiving tool. It is that simple! That's because:
  • your attitude is all important. When you feel harried and overburdened, it is difficult to be patient and easy to be irritable, difficult to respond positively and easy to react negatively. You are less likely to get the result you want--which causes you more stress, more frustration and more burden.
  • your loved one will pick up your feelings, personalize them and mirror them back at you, often magnified. Your stress becomes their anxiety. Your frustration with the situation becomes their anger at you.
Taking care of yourself involves time away from your loved one, time away from caregiving, time for yourself, doing things you enjoy. This is not selfish, frivolous or uncaring. Nor is it optional, any more than good wound care is optional. That is, you don't have to do it but if you don't, you pay the consequences. This blog isn't about how you can do this, but how you must, even if you have a limited budget. There are many ways and each care partner must choose which ones work best in their situation.

For ideas, see the many previous blogs on this site about self-care like this one, as well as many other online articles. Be sure to choose some in-the-moment practices, such as deep breathing. These shorter "quick fixes" help you to deal with immediate stress. Also choose some longer "me times", such as lunch with a friend or even a few days away. These longer respites allow you to relax, regroup and regain your focus. Revived, you can return alert and energized, ready to deal with issues that once seemed overpowering. You need both the quick fixes and the longer respites. Each plays a part in helping you deal successfully with the difficult behaviors that dementia presents to a care partner.

With ongoing self care, you can be a more alert, rested, relaxed, patient, positive, accepting, empathetic and responsive care partner. (Never perfect, mind you, but not the easily frustrated and irritated person we tend to become when we feel overburdened.) Only then can you hope to deal successfully with your loved one's difficult behaviors. Until then, you are working at cross purposes, trying to fix a damaged system with weak and failing tools--tools that actually foster worse behaviors, not better ones.

Next week, more about dealing with difficult behaviors, focusing on some of the things that can't be changed but might be worked around.

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, May 24, 2019

Thera-Fibs 2: Not Just One Kind

Last week's blog was an introduction to therapeutic fibbing (thera-fibbing), a technique useful when a loved one's thinking errors make reasoning impossible. If you haven't read it, go back and do it now. This week's blog is has more about the multiple kinds of "thera-fibs."
Remember Katie's resistance to lying to her husband? She's not alone.

I see the value of thera-fibs, but when I try to use one, I feel awful. Usually, it isn't successful. -- Katie

Katie's discomfort is too obvious and that is what Fred reacts to, not what she says. One way for Katie to overcome this resistance is to think of thera-fibbing as improv acting. That is she would respond from Fred's reality, not her own. If Katie can view herself as play-acting in Fred's "drama," and not lying, she will probably be able to use thera-fibs with less discomfort. For more about using improv with dementia, start with our 10/24/17 blog.

It used to be that I could tell Fred that his little men weren't real and he'd believe me. But now I can't. What he sees is real to him and that's that. -- Katie

Going along. Improv works well for going along with Fred's hallucination. Hallucinations are difficult for LBD care partners because this symptom can show up prior before thinking errors. Katie had become used offering her own reality to Fred and having it accepted. And then it wasn't. His dementia had progressed and taken away his ability to accept any view but his own. As it often does, it took Katie a while to catch on, But now that she has, she can just go along, nod, and even ask a question or two to show interest. She can also enter his reality and use play-acting to move his "drama" to something more comfortable for him.

Avoiding or shading the truth. Improv can work with this too. The main thing to remember here is that emotions are more important than words. The goal is always to decrease the stressful ones and increase the positive emotions. For example, if Fred is resisting going for his usual walk because the neighbor's dog triggers fears from his past, Katie can reassure him that she will protect him. She might even carry a stick "for chasing the dog off." She doesn't try to tell him that the dog is not dangerous. She simply speaks to the fears.

A white lie. Sometimes lying seems the only answer. Fred's mother died years ago, but every once in a while he asks about her or wants to telephone her. Katie has learned not to tell him his mother is gone because this causes Fred to grieve her loss all over again. Instead, she says she is on a trip, or doing something where she can't phone. "Wait a day or so to call," she tells him. And then she suggests something that they can do, like calling their son. This distracts Fred and he forgets about his first concern. Katie has also learned to avoid making promises she can't keep. For example, she didn't tell Fred his mom would be back in a day or so. He likely wouldn't remember, but if he did, she'd have to come up with another lie!

Tricks. These are setups so that the person living with dementia gets something they resist but need, such as a nap, medicine or a doctor's visit. The trick might be fairly simple, such as putting medicine in applesauce so that Fred will eat it. Or it can be more complicated like combining an ice-cream run with an "impromptu" (but actually well-planned) stop-off at the doctor's office first.

Withholding the truth. Katie and Fred were used to sharing everything. When his mother died, they grieved together. When their son won a trip to Hawaii, they celebrated together. Those days are over. Now, issues that aren't in Fred's "here and now" simply make him anxious. Katie has learned to edit them from her conversations with him. She didn't tell him when a friend passed away or when another one had a new grandchild.

Like the care Katie and Fred once took to be truthful with each other, the sharing of such sorrows and celebrations was a valuable part of their relationship. Thus, these omissions are painful to Katie. She grieves their loss even though she knows that using thera-fibbing in its various forms makes Fred's life, and therefore hers, happier and less stressful.

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, May 17, 2019

Thera-Fibs 1: A Valuable Tool

I’ve never lied to Fred and I don’t want to start now. — Katie

This is a common dilemma among care partners, especially if you and your loved one have had a long term relationship built upon honesty and trust. However, dementia changes the rules. Because LBD's thinking errors can start well before the more obvious memory, these rule changes may need to start early too.

Dementia damages a person's ability to reason, judge, compare and see other options. (3/31/2017 blog) With these gone, a person is left with concrete thinking which is:
  • two-dimensional (either-or with no in-betweens)
  • based on the first information received (the person's own view)
  • often combined with a past emotion
  • inflexible (CAN'T be changed)
  • impulsive (no consideration of future consequences)
  • lacks empathy (unable to put themselves in your shoes)
When Katie understands that Fred's reality is "hard wired" or inflexible, it is easier for her to accept that no amount of explanations, arguing, defending or even begging is going to change what he believes and what he acts upon. Then she can explore other ways of interacting; ways more supportive of Fred's needs than a truth he can't accept or that will cause him unnecessary distress.

Therapeutic fibbing (or thera-fibbing) is one of these methods. There's good support for this technique. When early stage dementia patients were polled, they found the technique acceptable when a) it is for the person’s own good and b) the dementia is so advanced that lie isn't recognized as such." A nursing group recommended it "when the truth would incite mental anguish, anxiety, agitation and confusion." Another group noted that unvarnished honesty can lead to distress for both care partner and loved one. Thus, thera- fibbing could helpful for Katie...and ethical--if she uses it to:
  • Create safety. Ex: To stop Fred from unsafe driving.
  • Enhance quality of life: Ex: To decrease the stress caused when Katie expresses a reality that is different from Fred's.
  • Ensure well-being: Ex: To convince Fred to take his medication.
However, thera-fibbing is not a cure-all. It should be used in moderation and combination with other techniques, such as these:
  • Change the subject – Rather than agreeing or disagreeing, Katie can bring up to a different topic as a way to get Fred to change his one-track mind to something more acceptable.
  • Speak to the feeling, not the words: Identify and respond to the emotion driving Fred's behavior. If he is resisting their daily walk because of an imaginary dog that triggers old fears, Katie can empathize with Fred's fear and assure him that she'll keep him safe.
  • Let it be – If Fred is peaceful and in no immediate danger, there’s no harm in letting him stay in their own reality, no matter how disconnected it may be from the present.
Next week: Thera-fibbing Pt. 2: More than One Kind

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, May 10, 2019

Finding a Lewy-savvy Pharmacist

Right now we have three books in the works (two revisions and a new one) and an international conference poster presentation to prepare. We have help with all of these, but they are taking up my time and I haven't spent much time working on blog entries. As I do once in a while I went back and looked at past blogs. I found this one from 2012. The information hasn't changed, but I'll bet our readership has!

When people ask us about how specific drugs might interact with their LBD, we often suggest that they check with their local pharmacist. And so, of course, the next question is, “How do I find a Lewy-savvy pharmacist?” This is a valid question. Although it is the pharmacist’s job to be aware various drug actions and interactions, they too, may or may not have had the training they need to be Lewy-savvy. And so it’s a good idea to check this out ahead of time.

Go to wherever you get your prescriptions filled and ask the pharmacist some LBD questions to which you know the answer. If you like the answers to these questions, you can probably trust their answers to other questions. However, remember that the same pharmacist may not always be on duty, and so be careful to ask for names and shift times. You might want to do this at several different places and chose the pharmacist you like best, even if it means changing where you do business.

The same applies to anyone who works with your loved one—physical, speech, or occupational therapists for instance, or health aides—and yes, doctors too. In each case, make your questions specific to the service your candidate will be providing. For instance, you would ask a drug question of a pharmacist and perhaps a question about fluctuating abilities of a physical therapist.

Although you may only need your pharmacist to be Lewy-savvy, you need more for those who have more interaction with you and your loved one. They also need to be teachable team players. In fact, for many of those who provide a special service, such as a speech therapist, these last two are the most important. Even if they don’t start out being Lewy-savvy, their willingness to work with and learn from you will make them so eventually.

A team player sees you as an important part of the team. They ask questions about your particular situation and listen carefully to what you have to say. They ask your opinion and include you in final decisions.

Being teachable does not necessarily mean that a person takes what you share about LBD at face value. However, they should be willing to listen, ask questions and do their own research to validate your information. On the other hand, you should be viewed as the expert on your loved one’s unique way of doing LBD—what works for them and what doesn’t.

Doctors, neurologists and other specialists need to have all three of these aspects. They need to be Lewy-savvy, teachable AND team players. However, you can do much of your search for a doctor before you ever meet them. Using word of mouth is often a good way to begin the search. Ask other LBD caregivers who they use and how they like them. If you don’t know of any other caregivers, ask on the LBDA forums or the LBD Caregiver Yahoo groups. (see blog). Also ask for Lewy-savvy doctors and specialists at teaching hospitals and research facilities in your area.

Once you have some names, make an appointment for an interview. Ask your questions and make your observations. Also, you need to be able to share information with the doctor without your loved one present. If this isn’t an option, Showtime (5/25 blog) will become an issue. Even if you decide this doctor isn’t for you, the cost of the visit is worthwhile, simply to “rule out” this one and move on to someone else. Good luck with your hunting.

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, May 3, 2019

Ten Rules for Happier Caregiving

Someone posted this on the Facebook Lewy Body Dementia Carers website recently. It is so apt, we just had to pass it on!

When dealing with a person living with dementia:
  1. Agree, never argue
  2. Divert, never reason
  3. Distract, never shame
  4. Reassure, never lecture
  5. Reminisce, never say "remember"
  6. Repeat, never say "I told you"
  7. Do what they can, never say "you can't"
  8. Ask, never demand
  9. Encourage, never condescend
  10. Reinforce, never force
And here's one from us as a bonus:
  • Apologize, never defend
This is just the sort of information that's in our Responsive Dementia Care book, put into a simple list that you can post somewhere for quick reminders. (We all need these!!) Thanks to the Facebook poster and to her source, Cerescan.com/conditions/Alzheimers. BTW, I've been monitoring the Lewy Body Dementia Carers page for some time now and it is a very worthwhile resource. If you haven't joined yet, consider doing so right away! As for Cerescan, they are apparently an independent diagnosing company that sounds interesting but which we know nothing about.



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, April 26, 2019

Decoding the DLB Diagnostic Criteria, #5: Formula

This is the last of five blogs about the 2017 diagnostic diagnosis of dementia with Lewy bodies (DLB), a document written for doctors but one which even stressed-out care partners should know about. Thus, over the last month, we've attempted to "decode" its language and present a more care partner-friendly version. In this last blog, we find out how to use these symptoms to identify the likelihood of Probable or Possible DLB. Although this section seems easier to read than other sections, I've still added an "In plain English" segment just for continuity.

The publishers of the criteria use a formula to identify Probable or Possible DLB, and to rule it out to a certain extent. As always, they are careful to never say "always" or "never"!

Probable DLB can be diagnosed if:
  • two or more core clinical features of DLB are present, with or without the presence of indicative biomarkers,
  • or
  • only one core clinical feature is present, but with one or more indicative biomarkers.
Probable DLB should not be diagnosed on the basis of biomarkers alone.

In plain English: Probable DLB can be diagnosed by the presence of a) least two core symptoms with or without biomarkers or b) one core symptom with at least one indicative biomarker but not by biomarkers alone.

Possible DLB can be diagnosed if:
  • only one core clinical feature of DLB is present, with no indicative biomarker evidence,
  • or
  • one or more indicative biomarkers is present but there are no core clinical features.
In plain English: Possible DLB can be diagnosed by the presence of a) at least one core symptom or b) one indicative biomarker.

The criteria also adds this:

DLB is less likely:
  • in the presence of any other physical illness or brain disorder including cerebrovascular disease, sufficient to account in part or in total for the clinical picture, although these do not exclude a DLB diagnosis and may serve to indicate mixed or multiple pathologies contributing to the clinical presentation,
  • or
  • b) if parkinsonian features are the only core clinical feature and appear for the first time at a stage of severe dementia.
In plain English: DLB is less likely in the presence of another physical illness or brain disorder with similar symptoms, although both it and DLB could be present. It is also less likely if the only core symptoms are movement issues that appear only after severe dementia is present.

Note that neither suggestive symptoms nor suggestive biomarkers are not included in these formulas. They simply add weight to a diagnosis. However, as care partners, recognizing these symptoms can definitely signal the need to see a doctor.

For more information, download the 2017 DLB Diagnostic Criteria if you haven't already done so. Also, find lots of information about the various symptoms in our books.

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, April 19, 2019

Decoding the DLB Diagnostic Criteria: #4, More Biomarkers

The 2017 diagnostic criteria for dementia with Lewy bodies (DLB) is important for care partners to know but this part of it especially is written in scientific language that is difficult for even a well-educated person to understand. This series of blogs attempts some decoding.

Last week introduced a two-part biomarker section and the three indicative biomarkers. This week's blog presents the three suggestive biomarkers. If you haven't read the previous blogs in this series, please go back and read them now so that you will better understand this one.

Supportive biomarkers are signs indicating the presence and intensity of DLB that cannot stand alone but can support a diagnosis based on other symptoms and biomarkers.

Supportive Biomarker 1. Relative preservation of medial temporal lobe structures on CT/MRI scan.
  • relative preservation: maintenance of function in relation to the norm
  • medial temporal lobe: The part of the brain responsible for memory of facts and events.
  • CT/MRI scans: Two types of 2-D scans of organ tissues.
What are they testing for? The amount of shrinkage in a part of the brain involved with memory.

Why? Shrinkage of this area is significantly related to Alzheimer's, but not to DLB.

In plain English: Little shrinkage of the area of the brain involved with memory of facts and events supports a DLB diagnosis.

Supportive Biomarker 2.  Generalized low uptake on SPECT/PET profusion/metabolism scan with reduced occipital activity +/- the cingulate island sign on FDG-PET imaging.

Let's divide this one into two parts:

Supportive Biomarker 2a. Generalized low uptake on SPECT/PET profusion/metabolism scan with reduced occipital activity
posterier cingulate cortex
location of  the posterier
cingulate cortex
  • Generalized low uptake: All-around low activity
  • SPECT/PET scans: 3D scans using radio-active tracers.
  • Profusion/metabolism scan: scan for brain activity
  • Occipital (lobe): an area at the back of the brain.
What are they looking for? Low levels of activity in the occipital lobe.

Why? This area of the brain controls visual functions related to DLB symptoms, including the core symptom of visual hallucinations. It is usually less damaged by Alzheimer's.

Supportive Biomarker 2b. The cingulate island sign on FDG-PET imaging may or may not accompany 2a.
  • FDG: A radio-active tracer used with PET scanning.
  • Cingulate island sign: a finding of preserved metabolism in the posterior cingulate cortex
  • Preserved metabolism: normal activity
  • Posterior cingulate cortex: An area deep in the back of the brain.
What are they looking for? Fairly normal levels of activity in an area of the brain ordinarily damaged by Alzheimer's.

Why? Brain damage in this area is common with Alzheimer's. The more normal brain activity called "cingulate island sign" is usually present with DLB.

2a and 2b together in plain English: A scan that shows decreased brain activity in the occipital cortex supports a DLB vs. a Alzheimer's diagnosis, as does the presence of the cingulate island sign.

Supportive Biomarker 3. Prominent posterior slow wave activity on EEG with periodic fluctuations in the pre-alpha/theta range.
  • EEG: (Electroencephalogram): measures electrical waves of brain activity through the scalp.
  • posterior slow-wave activity: Slower than normal brain wave activity.
  • periodic fluctuations: periods of changes in wave activity.
  • the pre-alpha/theta range: Alpha waves occur when a person is awake and alert. Theta waves occur during relaxation and light sleep. (I could not find a definition for "pre-alpha/theta range." Help invited!)
What are they looking for? Slow brain activity with periodic episodes of higher functioning.

Why? Cognitive fluctuations are common with DLB but not with Alzheimer's.

In plain English: An EEG that shows slow cognitive activity with periods of an increased level of functioning is supportive of a diagnosis of DLB vs. Alzheimer's.

Next week: The "clinical features" or symptoms.

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.
Radio-active imaging: An imaging process that uses a radio-active tracer.
Radio-active tracer: biomarker that can enter the tissues or cells of the body.
Uptake: The process of absorbing a substance so that it can be released on the other side of the cell.

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.

Decoding the DLB Diagnostic Criteria, #3: Biomarkers

This series of blogs will attempt to decode the scientific language used to write the latest DLB diagnostic criteria and come up with a plainer version. If you haven't read the previous blogs, please go back and read them before you read more.

A biomarker is a fancy word used to describe a something measurable that can indicate the presence and severity of whatever you are testing for. We are all familiar with blood, urine and saliva tests. These are all used to test for biomarkers for a variety of conditions from pregnancy to strep throat to HIV and much more.

Presently, biomarkers are mainly used for confirming a diagnosis. However, they are the hope of the future. They can reach inside cells to fine minute, early signs of a disease well before there are symptoms, and before it grows too big to eliminate. Many people are now living healthy lives after being treated for a cancer that was found while it was still small enough to treat successfully. Until recently, that was not possible with neurological diseases like DLB. One had to wait for the symptoms to show up to know it was present--and by then the disease is so entrenched that one can do little but treat the symptoms. However, researchers can now focus on finding ways to stop it from growing.

But that is for tomorrow. Today, biomarkers help to diagnose DLB by signaling the presence of Lewy bodies in a tested item and providing a measurement of how plentiful they are--or of the damage they have done.

The criteria divides the biomarkers into "Indicative" (strong) and "Supportive" (helpful). Today's blog will discuss the three Indicative Biomarkers. Next week's blog will go on to discuss the Supportive ones.

The first two indicative biomarkers involve radio-active imaging. To go deep into the body tissues, they use a tiny amount of a radio-active tracer substance that goes to a targeted area and then normally exits the body within 48 hours.

1. Reduced dopamine transporter (DaT) uptake in basal ganglia demonstrated by SPECT or PET scans.
  • dopamine (DA): A brain chemical that is involved in the control of many tasks, including voluntary movement.
  • dopamine transporter (DaT): A protein that the body uses to move dopamine in and out of a cell.
  • uptake: the process of absorbing the dopamine so that it can be released on the other side of the cell.
  • basal ganglia: Area of the brain where movement, speech, posture and much more is regulated.
  • SPECT and PET scans: 3-D imaging technologies that measure the presence and progress of specific radio-active tracer substances inside body cells. See this article for a discussion about these two imaging processes.
What are they looking for? Signs of an inadequate amount of dopamine inside the cells.

Why? Lewy bodies are known to target and damage dopamine in these cells, which require the chemical to function properly.

In plain English: Lewy bodies are probably present if the scan shows signs of inadequate amounts of a dopamine in cells that control functions related to several LBD symptoms.
    2.  Abnormal (low uptake) 123iodineMIBG myocardial scintigraphy
    • Abnormal (low uptake): unusually low activity
    • 123iodineMIBG: a radio-active tracer substance
    • myocardial: of the heart muscle. From myo (muscle) and cardia (heart)
    • scintigraphy: 2-D imaging that measure the presence and progress of specific radio-active tracer substances inside body organs. (More about MIBG imaging)
    What are they looking for? Damage to nerves that control autonomic heart function.

    Why? Lewy bodies are known to damage the nerves that control autonomic functions such as heart beat and blood pressure. (More about LBD's autonomic symptoms.)

    In plain English: DLB is probable if an image of lower than normal tracer activity shows the type of heart muscle nerve damage connected with several DLB symptoms.
      3. Polysomographic confirmation of REM sleep without atonia (muscle relaxation).
      • poly (many) somno (sleep) graph (test): Sleep study that measures brain waves, blood oxygen level, heart rate, breathing, eye movements and leg movements.
      • Rapid Eye Movement (REM) sleep: The part of the sleep cycle when a person dreams.
      • atonia: Muscle relaxation. 
      What they are looking for? Evidence of muscle activity during dreams.

      Why? During REM sleep a person's muscles are normally so relaxed that they can't physically act out their dreams.

      In plain English: DLB is probably present if a sleep study confirms the presence of muscle activity during dream sequences.

      Or: DLB is probably present if a sleep study confirms the presence of REM sleep behavior disorder (RBD), a core DLB symptom. (more about RBD, also called Active Dreams)
        The above biomarkers provide objective tests for inadequate dopamine, a body chemical necessary for good cognition, heart nerve damage known to cause certain DLB-related autonomic dysfunctions, and Active Dreams, a core DLB symptom. None of the tests are considered 100% reliable alone but used with the more subjective clinical symptoms, they make a diagnosis about as accurate as it gets.

        Next week: Exploring the Supportive Biomarkers.

        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.
        Radio-active imaging: An imaging process that uses a radio-active tracer.
        Radio-active tracer: biomarker that can enter the tissues or cells of the body.
        Uptake: The process of absorbing a substance so that it can be released on the other side of the cell.

        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, April 5, 2019

        Decoding the DLB Diagnostic Criteria, #2: Symptoms

        The criteria for diagnosing dementia with Lewy bodies was written for doctors, not stressed-out care partners. Therefore, this series of blogs attempts to decode it. The original language is presented in italics, followed by definitions, a plain English version of the statement and a reference where you can find more information.

        Last week's blog noted that a certain amount of cognitive decline was essential for the diagnosis. If you haven't read it, please go back and do so before you go on. It's all connected! And please understand that this information is for educational purposes only! If you recognized these symptoms in a loved one who hasn't been diagnosed yet, a doctor's visit needs to be your next step!

        Core Clinical Features
        (NOTE: The first 3 typically occur early and may persist throughout the course)
        • clinical features: symptoms
        • occur early: appear prior to obvious cognitive symptoms
        • persist: last to the end
        In plain English: Three lasting symptoms that tend to appear early  plus one which also lasts once it starts.
          Core Symptom #1. Fluctuating cognition with pronounced variations in attention and alertness.
          • cognition: mental ability
          • attention: the ability to maintain focus over time
          In plain English: Mental function that varies in the ability to focus and be alert. More about this.

          Core Symptoms #2. Recurrent visual hallucinations that are typically well formed and detailed.
          • recurrent: appear more than once.
          • visual hallucinations: seeing something that isn't really there.
          • well-formed and detailed: strong appearance of reality 
          In plain English: Visual hallucinations that feel very real and can appear over and over. More about these and other visual problems.

          Core Symptoms #3. REM sleep behavior disorder (RBD) which may precede cognitive decline.
          • REM (rapid eye movement) sleep: the sleep cycle when dreams occur and a person's limbs are normally so relaxed (paralyzed) that they cannot move.
          • RBD: When a person physically acts out their dreams while asleep. 
          In plain English: The person physically acts out their dreams and may start doing so prior to loss of cognitive abilities. More about RBD. (Also called "Active Dreams.")

          Core Symptoms #4. One or more spontaneous cardinal feature of parkinsonism – these are bradykinesia, rest tremor, or rigidity.
          • Parkinsonism: Movement symptoms caused by something other than Parkinson's. Often caused by antipsychotic drugs. More about the difference between Parkinson's and Parkinsonism.
          • spontaneous cardinal feature: A major clinical symptom that occurs without the use of antipsychotic drugs
          • antipsychotic drugs: behavior management drugs that are usually anticholinergic--i.e., drugs that trigger LBD's sensitivity issues. More about these drugs. 
          • bradykinesia: slowness of movement and the impaired ability to move the body swiftly on command.
          • rest tremor: a tremor that only shows up when a muscle is relaxed.
          • rigidity: Stiffness and inflexibility of the limbs
          • postural instability: unstable while standing.
          In plain English: One or more of the following in the absence of antipsychotic drugs: Slowness of movement, difficulty moving swiftly on command, tremors while at rest and rigidity.

          Supportive Clinical Features

          This next group of symptoms also occur regularly with other diseases. However, their presence, while not as clearly indicative, is still quite helpful in making a diagnosis. This section is just a long list in the DLB diagnosis criteria but I've added a bit about each symptom. Go to our books for more information:
          • Severe sensitivity to antipsychotic agents: Although not a core symptom, this is still very important because people living with DLB are often sensitive to the very drugs they receive to treat symptoms involving behavior management, incontinence or even movement.
          • postural instability: a Parkinsonism symptom.
          • repeated falls: usually related to movement issues, but can also be related to poor visual perceptions.
          • severe autonomic dysfunction: The autonomic nervous system controls the automatic body systems such as such as heart beat, blood pressure, breathing, and bladder control. Includes the following symptoms and more:
            • syncope or other transient episodes of unresponsiveness: a loss of consciousness, usually related to a fall in blood pressure.
            • constipation: a backup of processed food in bowel caused at least in part by an ineffectively functioning digestive system.
            • orthostatic hypotension: Low blood pressure on rising
            • urinary incontinence: Poor bladder and sphincter control.
          • hypersomnia: Excessive daytime sleeping.
          • hyposmia: Loss of smell.
          • hallucinations in other modalities: All senses can foster hallucinations, but audio ones are the next most common after visual ones.
          • systematized delusions: Well-structured (systematized) dramas built around false beliefs (delusions).
          • apathy: The inability to respond emotionally. Lack of interest, enthusiasm or concern.
          • anxiety: Restlessness, worry, nervousness, the feeling that something terrible is going to happen.
          • depression: Feeling sad, hopeless, without energy.
          Next week: On to the biomarkers!

          In the meantime, download this Patient Checklist for Diagnostic Symptoms. You can fill it out and take it to your loved one's doctor the next time you go. (If you tried to download it from the 2017 criteria last week, this is a different address. It works!)

          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.

          Sunday, March 31, 2019

          Great Book Promotion #2:


          Here's the second  book promotion I promised you. It is even more exciting!

          In honor of Spring and the hope it brings, we are giving away another FREE eBook, Managing Cognitive Issues in Parkinson's and Lewy Body Dementia! This is the followup book to the Caregiver's Guide, with a special focus on:
          • Those symptoms shared by Parkinson's and Lewy Body Dementia
          • LBD's drug sensitivity issue
          • Alternative options that allow you to use fewer drugs
          Just CLICK HERE to go right to the book's page on Amazon and "buy" it for FREE. Don't wait to do this.
          The offer is only good for five days--April 2 through April 6.

          Here's a little bit of news on what we are working on now. We are almost done putting together a new Manual for Staff, with up-to-date information--like the information in our recent blogs about diagnostic criteria!

          Finally, don't forget about the 40% sale on the Caregiver's Guide. It's still good. Be sure to go back to my previous blog and check it out!

          This Friday's blog with be Decoding the DLB Diagnosing Criteria, Part 2: The Symptoms.

          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 29, 2019

          Two Great Book Promotions!

          We interrupt the series on Diagnosing LBD to give you some wonderful news! The series will be back next week but today, we are excited to share two great book offers with you. This is the first one:

          Our publisher is having a spring sale and is selling A Caregiver's Guide to Lewy Body Dementia for 40% off. Many of you may already have this book. It has been the basic LBD Care partner's book for a long time and still contains all information a LBD care partner needs to know, written in a easy to read style and filled with personal experiences.  Now is the time to get your copy or buy another to give to a relative or helper as a gift!
          Just CLICK HERE to go to Springer Publishing and order the book. Use the code GET40VIP to get your discount.


          While we are talking about books, don't forget our latest, Responsive Dementia Care: Fewer Behaviors Fewer Drugs. Our readers tell us it is our best book yet! It deals specifically with those dementia-related behaviors that have traditionally been treated with behavior management drugs. However, we know that LBD doesn't do well with these drugs. They are the ones most likely to trigger a drug sensitivity. And so, this book offers readers many ways to treat these symptoms with fewer drugs and often a better quality of life. You can find it on its own website and on Amazon.

          Watch for another blog in a couple of days about a FREE eBOOK.

          Next week we'll be back on track, with the second blog on
          Decoding the DLB Diagnostic Criteria, and a discussion on the defining symptoms.

          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 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.
          Lewy.ca 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.