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

Friday, August 16, 2019

2019 International LBD Conference: Susan Schneider Williams


The Caregiver Track of the conference highlighted people living with LBD and their experiences. This week, our guest blogger, Rosemary Dawson, tells us about one of these speakers.

Susan Schneider Williams, Robin Williams’ widow and probably the country's most high-profile LBD advocate, did an exceptional job during the welcome and round table. Her level of knowledge, amount of self-disclosure, vulnerability, and ability to articulate important points provided standout moments. Susan shared information about her Lewy journey with Robin that I hadn’t seen disclosed before.

Despite their wealth and number of specialists, they experienced what so many of us have been through. Increasing symptoms, no diagnosis, incorrect diagnoses, and incomplete diagnosis (PD). Robin never knew that he had LBD because it was only upon autopsy that they discovered what one LBD specialist described as the worst case of LBD he had ever seen as well as signs of Alzheimers. Mixed dementia is very common, but as with Robin, often not discovered until autopsy.

Also, in retrospect, it is apparent that Robin experienced many of the classic LBD symptoms: short term memory loss (inability to memorize his lines for his last film), hallucinations, paranoia, anxiety, parkinsonism, withdrawal, loss of executive functions, and more. He knew something was wrong and wanted to re-boot his brain. Because of his previous experiences with substance abuse and depression, some doctors misinterpreted his symptoms and prescribed drugs that can have adverse effects on people living with LBD. Although he had been drug-free for many years, he returned to a 12-step rehab program to see if the strategies there might help with his current condition. It didn’t.

After Robin Williams died in 2014, Susan set out to raise awareness about this little known yet devastating brain disease by telling about his exhaustive battle with LBD.
https://www.americanbrainfoundation.org/about-us/governance/susan-schneider-williams-bfa/
As spokesperson for Lewy Body Dementia, she is committed to raising awareness for brain disease. She has appeared on many talk shows and serves as the Vice Chair on the board of directors for the American Brain Foundation. In 2016, she moderated a 2016 Forbes Healthcare Summit panel, authored an editorial for Neurology, the journal of the American Academy of Neurology and received the American Brain Foundation's Commitment to Cures Award. Her Neurology editorial for “The Terrorist Inside my Husband’s Brain” is required reading in many medical schools and has been downloaded millions of times. You can read it at https://n.neurology.org/content/87/13/1308

Robin's Wish is a timely and urgent biographical documentary of the much beloved Robin Williams that weaves together the untold love story of his third marriage, his untimely suicide, his unknown illness and his universal experience moving through pain in the search for healing and joy. You can see excerpts from the film and read a full description here. (Note: the description calls Robin's disease rare. We know that although it is often unrecognized, it is far from rare! With 1.4 million people in the US alone, it is not rare. Rare is 20,000 or fewer.
https://www.documentaries.org/robins-wish

This film will have a first showing as a fund raiser in New York on July 17th. After that, Susan is not yet sure how it is going to be distributed - likely online - perhaps, iTunes, Amazon, or Netflix. https://lewybodyresourcecenter.org/robins-wish-lincoln-center/




Susan is opening a topic of discussion that needs more light shed on it: suicide. Lewy bodies can destroy the parts of the brain that control rational thought and decision making, and some drugs prescribed for the symptoms of LBD can cause suicidal ideation, suicidal behavior, and suicide-related events. I hope that Robin’s Wish provides a good understanding of these potential causes of suicide.


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, August 9, 2019

2019 International LBD Conference: Patient/Care Partner Track

This week's blog is about presentations in the Patient and Care Partner Track of the 2019 International LBD Conference that we attended recently in Las Vegas.

Several people living with early stage Lewy talked about their experiences, with an emphasis on the fact that although they have the disease, they are still the same person, albeit with more limited abilities. This loss of abilities has led to their need to find other ways to feel usefull. Family members, including Robin William's wife and Ted Turner's daughter, talked about their experiences and their loved one's journeys. In future blogs, Rosemary Dawson will be telling about these interesting speakers. Today's blog is a summary of some of the other presentations. I will cover several of the topics much more thoroughly in future blogs.

Partnering with your Medical Team. Dr. Melissa Armstrong, Florida, presented methods for partnering with your medical team. Her main points: a) know yourself and your loved one, b) help your team get to know you, c) identify your team, d) partner with them, and e) continually reassess.

Dealing with Fluctuations an Hallucinations by Tanis Ferman, a  pioneer in LBD-related behavior management. Highlights were a discussion of what fluctuations and hallucinations are and aren't, why hallucinations occur, their connection to emotions, and some management suggestions. Along these same lines, Dr. Boeve, another LBD pioneer, talked about Coping with RBD but didn't provide any literature.

Evidence based Strategies for Supporting Care at Home by Laura Gitlin, Dean of College of Nursing and Health Professions, Drexel University. Laura advocated changing the cycle of care from an unhelpful one with little care or patient/caregiver input to a more hopeful one, with patient and care partner participation.

Four Pillars of LBD Care and Empowerment, by our own LBDA staff member, Angela Taylor. The pillars are 1. Advance preparation, 2. Use outside resources, 3. Care for yourself, and 4. Leverage your experience.

Non‐drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Symptoms by Rosemary Dawson and the Whitworths (yes, us!). Although Dr. Ferman talked about hallucinations and Dr. Boeve talked about RBD, our poster was the only other presentation specifically about dealing with behavioral symptoms. We identified dementia-related behaviors and listed a variety of non-drug therapies. It is quite thorough and can be accessed via our website and used by group facilitators or others who want to spread the word about dealing with these bothersome symptoms with fewer drugs.

End of Life and Use of Hospice Care in Patients with Dementia with Lewy Bodies. Briana Arman, Cleveland U.. Briana's poser showed that while hospice was often utilized, it was seldom for more than a few days or weeks. While new regulations have made it difficult for someone with only dementia to go on hospice, people living with LBD usually have other physical conditions that would help them qualify. However too many people still believe that hospice is only for the final days.

Staying Connected and Living Well with LBD, by Allison Killen. The founder of the Lewy Body Society in the UK presented this as being informed, focuses on the positive and involved and discussed various aspects of this.

Thriving Through Singing, by Mary Lenard. The co-founder of Giving Voice talked about how singing, especially in groups, fosters well being, purpose, community and understanding. Her group inspires and equips organizations to bring together people living with dementia and their care partners to sing.

Finally, a few other bits of information we picked up:

A Canadian poster pointed out the importance of social media for support for those in rural areas, and especially for those dealing with early onset dementia. (Or I'd suspect, any kind of rare diseases where even in an urban setting, specific support groups would be limited.)

We found it interesting that researchers discovered no significant evidence of age-related decline in adults over 60 without LBD. For researchers, this is of concern due to possible over-correction for "age." For the rest of us, it means that we can't claim "senior moments" as easily...and that they are more likely evidence of early MCI! (But also, let me remind you, of stress.)

Microbleeds (small chronic brain hemorrhages) in patients with DLB were related to high blood pressure but not DLB or AD. (We wondered if they were related to vascular dementia?) They were associated with less severe attention, visuospatial dysfunction and less parkinsonism.

The next blog: More conference information.

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, August 2, 2019

2019 International LBD Conference: Overview

Last week was about the helpful programs and projects we learned about at the conference. This week a review of 142 abstracts gives us a general overview of they kinds of information presented at the conference. About half were scientific and half were clinical.

The scientists focused on biomarker identification in early LBD and in comparing LBD and AD brain pathology. The focus has definitely shifted from finding new ways to treat dementia to finding ways to identify it as early as possible. Mild cognitive impairment (MCI) was a much mentioned phrase and many reports were about efforts to identify and compare early symptoms in those with various kinds of MCI. Another strong area of focus is the identification of mixed dementias. One report noted that identifying the differences between DLB-AD and 'pure' DLB was equally or even more important than  identifying the difference between DLB and PDD.

Of the LBD symptoms, hallucinations, parkinsonism, RBD (Active Dreams), cognitive fluctuations and depression were the most discussed.

Hallucinations and visuospatial dysfunctions (poor hand-eye co-ordination, poor depth perception) were found to be associated with orthostatic hypotension (low blood pressure on rising) and slow cognition. People who hallucinated were found to put more emphasis on prior knowledge than they did on their senses. Thus, if a person has had prior knowledge of a dog that bites, then seeing a friendly dog may still be scary. This would also be more likely because the negative emotions tend to be in charge.

RBD (Active Dreams) at MCI diagnosis is related with a younger age, less AD, more parkinsonism, and a shorter survival. RBD was less common with LBD/AD females. A review of patients in a psychiatric hospital found symptoms indicative of RBD. Several reports found that home testing measures, including even a telephone interview for specific RBD symptoms might be as effective as formal overnight sleep test and much less of a hardship on the patient. Dopamine deficiency in patients with RBD was found to be a possible biomarker for dementia.

Parkinsonism at onset of MCI was always accompanied by RBD but did not predict DLB although it did increase any progression to DLB and was present 75% at time of death. It was associated with excessive daytime sleeping (EDS), less Alzheimer's and a shorter survival and progression to death.

Cognitive fluctuation biomarkers included telling time and EEGs: LBD-related cardiac (heart) nerve dysfunctions (an indicitative biomarker for DLB) were suggested to explain the differences in alertness. That is, when fluctuations in cardiac nerve function leads changes of oxygen to the brain with matching brain function fluctuations. These fluctuations continue to show up even late in the disease in 75% of patients.

Depression was identified as a serious, under-addressed problem with LBD, with some suggestions of its LBD related cause but few suggestions for treatment, other than increasing dopamine in some way.

Biomarkers were a big subject and covered a wide variety of objective, measurable tests. As care partners, we need to be especially aware of how valuable those obtained from the cerebral spinal fluid have become. There is a concerted effort to get people to submit to these tests, for their own needs but even more so for building up a network of subjects for clinical testing.

Drugs. There are still no drugs for treating DLB specifically, and no new ones for treating PDD. There are some variations of the old cholinesterase inhibitors (Aricept, Exelon and Razadyne) to make them longer-lasting, or used with a patch, or combined with drugs that reduce gastric side effects. There are a few drugs being tested.
  • Pimavanserin, an anti-psychotic approved for use with PDD psychosis, is now being tested with other dementias.
  • Neflamapimod, barely in Phase 2 testing for use with DLB, is believed to decrease brain inflammation that turns alpha-synuclien into Lewy bodies.
  • (Zonisamide-(ZNS), first used to treat epilepsy, is in Phase 3 trials for treating parkinsonism in DLB with fewer side effects than anti-Parkinson's drugs. Drugs that get this far usually go to market but it could still be five years before we see it. (These trials can last up to 3 years and then, it still has to go through an approval process with the FDA that can last for 2 years.)
  • Recruiting has begun for Phase 2 clinical trials of LY3154207, a PD drug that is hoped to increase dopamine function with fewer side effects.
Next week will be an overview of some of the subjects covered in the Patient and Care Partner track.

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, July 26, 2019

2019 International LBD Conference: Programs

At the 2019 LBD Conference we learned about several programs that foster better LBD research, care and education. Some have been around for a long time. Others we first heard about at the conference. The first four make it easier for you to find a Lewy-savvy doctor and other Lewy-specific services as well.

The Mayo Clinic has been a pioneer in LBD care and research. Several leaders in the field, such as Drs. Boeve, Ferman and Dickson practice there. Mayo has major campuses in Rochester, Minn.; Scottsdale/Phoenix, Ariz.; and Jacksonville, Fla. You can count on finding a Lewy-savvy specialist at any of these centers.

The Cleveland Clinic is another group that's been around for a while, with two main centers in the US and others in foreign countries. Dr. Leverenz, past chair of the LBDA Scientific Advisory Committee, practices in their Cleveland location. The Cleveland Clinic partnered with the LBDA to sponsor the 2019 International LBD Conference in Las Vegas, where their other main campus is located.

One of the most exciting things we learned about in the whole conference was how many LBDA Research Centers of Excellence (RCOE) there are now. Launched in late 2017, this exciting program has centers in 17 states and 23 metro areas. One of the RCOE's goals is to increase access to high quality LBD clinical care. An RCOE medical center will have physicians specializing in LBD on staff, sponsor LBD caregiver support groups and provide LBD-related educational training for staff, patients and their families and to the general public. These centers are going to make it a lot easier for families to find and receive good Lewy-savvy care!  Check here for RCOEs your area.

NIH sponsored Alzheimer's Disease Research Centers (ADRC) have been in effect for many years. Once focused on Alzheimer's, they now also address "related dementias." Thirty-three ADRCs centers provide informed research, treatment, support and education for people living with dementia and their families. These centers are less likely to have a LBD specialist on staff than the RCOEs, but are definitely worth checking out. Check here for ADRC center in your area.

The NIH (National Institute of Health) sponsored Alzheimer's Disease and Related Dementias (ADRD) Summit takes place every three years to review, assess and update national research priorities for Lewy body and other dementias and make recommendations for further research. In its March 2019, members made recommendations highlighting biomarkers development and use, research on alpha‐synuclein, protein spreading, genetic and environmental risk factors. NIH investment in LBD research has doubled since 2014, in part due to the additional funding made available by Congress to address the growing concern about AD/ADRD.

This list wouldn't be complete with adding some information about the 2019 International Lewy Body Dementia Conference. This is the first international conference since the original one in Fort Lauderdale in 2015. With specialists from around the world, celebrity family members, excited care partners and articulate patients and much more, it was filled with enough information to fill this blog for the next year!

There were also a couple of UK programs worthy of mention. One was the Diamond Study, which offers an "Assessment Toolkit for Dementia with Lewy Bodies." This checklist is designed to help clinicians more accurately diagnose PDD and DLB, using the 2017 DLB diagnostic criteria. Since multiple diagnoses prior to an accurate LBD diagnosis is a prime care partner complaint, anything that can improve the process is quite welcome! You can read more about this and see the checklist here.

The other UK program is called "Imagine." This program, sponsored nationally and by the Lewy Body Society, used care partner interviews to "imagine" their perceived needs and concerns for guidance in shaping future research. Hallucination, incontinence and sleep issues were the most challenging symptoms. "Meeting the demands of being a caregiver" was important but not usually a major challenge. Concerning future research, the group recommended more clinical trials about treating these more challenging symptoms, instead or in addition to those that focus on curing DLB or treating its cognitive symptoms. Their findings are in line with our experiences, which are that care partners want to know more about dealing with day to day issues although they don't discount the value of more scientific research.

Finally, we haven't even mentioned the LBDA or the UK's Lewy Body Society or our own Lewy Body Dementia Association. We'll save these for another day, along with a new US group and a few other foreign groups that have been around for a while.

BTW, we were going to go on a summer schedule of every two weeks, but we have so much conference material to share that that isn't going to happen after all!

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, July 19, 2019

2019 International LBD Conference: Impressions

1. First, let me say that on the whole the conference was great. However, our first impressions were, sad to say, negative. Environmentally, this conference was not designed for weaklings--or in our opinion, the elderly. It was difficult to access unless you stayed there (we didn't) and the Caesar's Palace, where it was held in Las Vegas, is HUGE. There were short flights of steps scattered throughout the buildings--just two or three, but enough to make wheelchair and walker travel difficult and further tire out the rest of us over 70. It must have been confusing for the many people living with LBD who attended too--A casino is a noisy, busy place with way too much going on. It was also either very cold (in the building) or very hot (during the social gatherings outside). It took us several days after we got home just to recuperate! I hope they choose a better venue for the next conference.

On the positive side, still speaking about physical comforts, they did a great job of keeping us fed. We didn't have to go out for any meals during the whole two day conference. They also provided some entertainment although we were too tired to stay and enjoy it. Those who did apparently had a fun time.

2. That said, let me repeat, the conference itself was great. It lived up to its name and really was international. We loved hearing speakers and meeting people from all over the world. We also liked that they divided the conference into professional and care partner tracks. Of course, we attended the care partner track and it was great that we didn't have to struggle as we usually do at these conferences to be able to understand the speakers. They did start out the conference with a morning session where we all met together. This gave us a small taste of what the scientists were working on. We liked that too. What they are doing is so important to all of us in the long run.

3. A highlight of the conference for Jim was being recognized from the podium as a founder of the Lewy Body Dementia Association. He is the only one of the five co-founders who is still actively working with LBD although he is no longer directly associated with the LBDA. As he should be, he is very proud of this accomplishment. Another highlight for us was that our book, A Caregiver's Guide to Lewy Body Dementia, was the top book listed in the Patient and Care Partner Guide, given to every family in that tract.

4. Rosemary Dawson, Jim and I put together a poster presentation that you can still see on our website. Even though there was only a very short time allotted for poster presentations, ours attracted some good attention. You can read the abstracts about all of the posters by clicking here. . A review of these abstracts is planned for a future blog so that you can get an idea of where researchers and clinicians are putting their focus.

5. Perhaps the best part of the whole conference was the chance to network with other LBD people. We re-connected many specialists such as Dr. James Leverenz, with whom we once enjoyed doing a presentation and Dr. Tanis Ferman, a pioneer in recognizing the need for behavior management with dementia. We caught up with old LBDA friends, Angela Taylor and Mark Wall, and put a face on other LBDA staff that we'd known only virtually. We also met finally personally some people we've worked with virtually for years, such as Rosemary Dawson, Caring Spouses moderator, and Norma Loeb, who is the founder of a fairly new organization, the Lewy Body Resource Center in New York. (Check it out here. She has tons of information on her site!) We talked to active care partners often accompanies by their loved ones, which is something we love to do. And finally, we got to talk to some folks from other countries. We met and visited with several people from the UK, including the founder of the Lewy Body Society. We had a meal with a doctor and nurse from Korea. Although these women had read our book in English, they were excited to learn that it had recently been published in Korean. We had a good conversation with a doctor from Australia, comparing our nation's acceptance of alternative therapies. He reiterated something we had heard before, that Australians are much more accepting of these non-drug treatments than the traditional US medical system is. One thing we didn't do well was collect business cards and so we often remembered the people but not their names. (Note to self: do better at this next time.)

6. Personally, we had a chance to visit with family members in the Las Vegas area. This was good because this year has been a sad time for my family. We have recently lost two of our beloved family members. One, a nephew's wife, died after a long bout with Lewy Body Dementia. While we were sad to lose her, we were happy to know that she rests better now. The other was that nephew's younger brother. His death during what they thought would be a routine surgery to fix a long-lasting problem was unexpected and much more difficult to deal with. On a happier note, we also visited Jim's daughter who has moved with her husband to a community near Las Vegas. They weren't even moved in yet but they took us on a tour of their lovely new home, which includes a separate "casita" (one-room mother-in-law apartment) available for us when we come to visit.

The next blogs will be about information presented at the Las Vegas conference. You are in for a treat because Rosemary Dawson will be a guest blogger for some of this. I will also be reviewing the abstracts to give us an idea of researcher and clinician focus. Actually, the conference has provided us with a ton of information and over the next weeks, we will share some of that with you!

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, July 12, 2019

When Nothing Seems to Work, Part 4

Two weeks ago, the blog was a third in a series about those difficult to deal with dementia-related behaviors that just don't seem to respond well to the easy fixes. While nothing will work all the time, and different things work best for different people, there are some basic guidelines. As a review:
  • A care partner who has done the homework and has a fair understanding of how the dementia-riddled brain operates has a better chance of getting cooperation from a loved one than one who continues use old, once very workable methods of communicating.
  • When abstract thinking goes, emotions take over. Since the brain considers anything generating negative emotions a crises, these emotions take precedence over any other considerations.
  • The dementia brain has only one-track. Once an emotion is present, the door is closed to anything more. Therefore, a PlwD will often seem much more negative than before and very resistant to change. 
  • A person's basic way of relating to the people they care about doesn't change although it will disintegrate. Thus, a couple with a calm, empathetic relationship prior-dementia will likely fare better than the couple with more ups and downs, even when the couples are equally caring.
This week we are talking about something else that doesn't change. A PlwLBD will probably try to maintain control of their life in the same way as they always have--only more intensively. Some people deal with life-changing issues by wanting to know all about them. Others deal with them by denying their presence. Most do a little of both, not denying heavily but not wanting to own it totally either. The care partner's job is to figure out which style their loved one uses, accept it and work with it. This is especially true if their loved one's style is heavily towards gaining knowledge or towards denial.

The first is fairly easy to work with. You just share everything you learn with your loved one. Likely you don't need to be sensitive about sharing too much. The more they know the more secure they feel--even if it is bad. Then you can use this information to work with them:

When Harold got all upset about the people who were walking all over our lawn, I just told him that it was Lewy playing tricks on him again. He still saw the people but they didn't bother him anymore because he'd read all about hallucinations and how they could be so real. -- Anita

Anita was able to use Harold's need to know and understand his illness to get past his brain's insistence that the people on his lawn were real. This may or may not continue as Harold's LBD progresses and his ability to accept a different view--even one he supports--diminishes. Eventually, Anita may have to simply join his reality and chase the people off.

The people who prefer denial are more difficult to deal with. The sad thing is that this tends to get stronger as the dementia progresses.

Jerry has never liked going to the doctor although he didn't used to be as resistant about it as he is now. "The doctor has to earn his pay and so he'll find something even if nothing's wrong," he used to say. I finally got him to go to a specialist who diagnosed him with LBD but Jerry doesn't accept the diagnosis and he won't go at all now. I'm at my wits end. He refuses his medications too. "I'm just fine," he insists. "I'm not taking pills for something I don't have." -- Claudia

Jerry has always dealt with the unpleasant things in his life by ignoring them as best he could. Pre-dementia, he was able to choose what to ignore and what he knew he had to deal with. But now, his brain isn't able to make choices and so he denies it all because that has always been his first choice.


First, Claudia should avoid telling Jerry about doctor's appointments ahead of time. A PlwD's difficulty with time management means that they will usually deal with knowledge of future events by becoming anxious. If it is something they want, such as a visit to see grandchildren, the anxiety will be about missing the event. For Jerry, his increased anxiety will turn into more resistance. Instead, Claudia can try:
  • Joining his reality and suggesting that they go to the doctor for a checkup, just to show the doctor how well he is doing.
  • Threra-fibs, discussed in a couple of recent blogs. The "trick" type is most likely to work, especially that of suggesting a beloved outing and adding the doctor's visit as an "afterthought."
  • Simply putting her foot down and saying, "We are going. Now, come along." As a PlwD becomes more dependent and more accepting of their care partner's decisions, this is more and more likely to work. Claudia shouldn't expect Jerry to go to the doctor willingly, but at this point, going in any mood is better than not going at all. 
When Claudia is dealing with Jerry's negative feelings and resistance, she needs to be careful not to let Jerry's mood rub off on her. Although he has no choice but to act on what he feels, she CAN resist being pulled down by his mood. If she ignores his negativity, she might even get him to mirror her positive attitude!

As for medications,
  • Claudia might want to discuss with the doctor just how important the various pills are. If they are only marginally helpful, then allowing Jerry the feeling of control in refusing them might go further than the pills do in improving his self-esteem and therefore, his actions.
  • If the medications are important, then the trick type of thera-fibs discusses in earlier blogs may again be the best answer. By crushing the pills and putting them in something Jerry likes, Claudia may be able to get them down him. 
However, nothing works all the time and different things work with different people. You just have to remember how the dementia-riddled brain works and keep exploring new ways to work with it.

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 28, 2019

When Nothing Seems to Work, Part 3

Two weeks ago, the blog was about how the dementia-riddled brain causes a person to:
  • be stuck with the first, often negative view of an event
  • have very little empathy
Today's blog is about how emotions drive behaviors. Dementia doesn't damage emotions like it does thinking and memory. Emotions can remain long after the person living with dementia (PlwD) has forgotten what caused them in the first place. And then they get attached to a future event.

Many dementia-related behaviors are driven by a these residual negative emotions. If you can identify the emotion and speak to it instead of your loved one's words or actions, you will have much better chance of success. Many of these emotions are going to be about things like loss, fear of abandonment and lack of respect.

Being calm and patient is a good first step, but that alone may not be enough. You need to really listen to what your loved one is feeling, not just saying. Look deeper than the anger or frustration. These are secondary emotions. Look for the feeling behind them. Helplessness? Fear? Loss? Often it is loss. For example, when the PwlD is railing about a lost driver's license, It might really be a loss of independence, of adulthood, of manhood even.

When the doctor reported John's dementia to the DMV and he lost his license, he was very angry. "Why did she that do that?" he asked. Mary told him, "She's required to." That kept John from being quite so mad at his doctor, but he was still fuming. He complained "I don't have any say over my life at all any more." Speaking to his sense of loss, Mary said, "That Lewy, taking one more thing away from you. It just isn't fair" and even let herself sound a little angry. Mary was doing two things here. She was validating John's feelings, showing "I'm on your side" support, and she was giving him a target for his anger besides her or the doctor--"that Lewy." It did help. John calmed down and said, "Yes, it is, it's not for sissies," a phase they used often about the disease.

You may have been warned not to show anger for fear of increasing your loved one's angry behaviors. However, a mild show of anger can work if you are clearly expressing it in support of your loved one, not at them or at the situation they have caused. This makes them feel heard and supported, not discounted or controlled. Just make sure your anger is less intense then your loved one's. You don't want them to escalate their anger to match yours! Also be sure to follow up such expressions with more soothing expressions of support. "I love you just the way you are," Mary might tell John with a loving pat on the arm or even a hug.

This same technique can work with any other feeling of loss. The goal is to validate the feeling so that the PlwD can calm down. Without the negative feelings reigning, a person can think more clearly. This is true for anyone, including a PlwD. Mary may have to play out the above scene several times if John doesn't remember and again, wants to drive.

Of course, this won't work for everyone. For example, some PlwD don't want to own the disease and so it is difficult to make it the scapegoat. And that's what the next blog is 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, 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.