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.